WEBVTT
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Justin Hensley is a devoted father and advocate in the metabolic community.
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Sharing the story of his son Micah, who is living with isovoleric acidemia.
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When Micah was first diagnosed, life felt uncertain.
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Today, he's thriving thanks to the right nutrition and a strong support network.
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What began as an overwhelming diagnosis has become a journey defined by resilience, nutrition, and the power of community.
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In this episode, we explore Micah's daily life with IVA, the pivotal moments that proved that he was thriving, and the vital role of nutrition, advocacy organizations, and a support network in helping families navigate rare conditions.
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Devilina joined us for this heartfelt conversation on metabolically speaking.
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You'll be reminded that with the right care, advocacy, and community, families facing metabolic conditions can help children truly thrive.
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Welcome to Metabolically Speaking, a podcast that dives into life with inherited metabolic conditions.
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Proudly brought to you by Canbrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
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I'm your host, Meredith Baker.
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I've lived with PPU my whole life, so I know the ups and downs and all the in-between moments that come with navigating a rare condition.
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Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition.
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Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
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So settle in and let's get into it.
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Welcome everyone to our sixth episode of Metabolically Speaking.
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Joining me today is Justin Hensley, a father navigating life with his son Micah, who has IVA.
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Justin shares the everyday realities of parenting with a child with a rare metabolic condition from managing routines and nutrition to celebrating small victories and milestones along the way.
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Throughout his journey, Justin has learned firsthand the value of community, resources, support networks, and he shares his experiences to encourage and guide other families facing similar challenges.
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Justin, we are so thrilled to have you here today.
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Thank you, Meredith, for having me.
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It's an honor to be here with you.
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We are truly excited to have you, and we're excited for the topics that we have planned today.
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All about resilience for yourself and your son Micah, the power of connection, and how families can face challenges, support each other, and thrive together.
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Are you ready, Justin?
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Sure am.
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Perfect.
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So to kick us off, could you introduce yourself and share a little bit about Micah, who he is, and why you're sharing his story today?
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Sure, Mary just.
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My name is Justin Hensley.
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Uh and again, I'm Micah's dad.
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Micah's a teenager now.
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Kind of hard to believe.
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He's uh kiddova with a great sense of humor, uh, strong preferences, and just a personality that fills the room.
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And as you mentioned, uh he has been diagnosed with isophaleric acidemia, and we'll just call it IVA because it's a mouthful.
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Uh and it's uh it's a rare inherited metabolic disorder.
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Um I I I like to share Micah's story of IVA because it doesn't just affect his lab values or his diet, it it affects the whole person.
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Uh, and it also affects the whole family.
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Uh so Micah's journey not only uh it includes not only managing a metabolic condition that he has, but also navigating uh intellectual disabilities that resulted from a severe metabolic crash on day five of life.
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Um so for those who are unfamiliar uh with IVA, uh it's a disorder where the body can't properly break down the amino acid leucine.
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Uh so there's all kinds of different ones.
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His has to do with leucine.
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And when that process fails, uh toxic byproducts, which in his case is ammonia, uh builds up and it can cause a metabolic crisis, uh, which it did for him severely on day five.
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Um so without careful management throughout the life of a person with IVA, those crises can be life-threatening uh and can cause uh permanent neurological damage.
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Um so that makes nutrition uh and early intervention absolutely critical.
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Absolutely.
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Thank you for sharing that, Justin.
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And I'm sure we'll get more into it.
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Is there an easy way or a quick way you explain IVA to the average person?
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Yeah, I think you know, a lot of people are are used to talking about allergies.
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Yeah.
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Right.
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So um, and maybe this is the same for you, Meredith.
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I I'm not sure.
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Maybe you know you could provide some insight here on how you talk about uh a PKU is similar but different.
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Um, but for a lot of people who don't understand, I I essentially start with, hey, like everything that we consume for the most part, uh, from orange juice to to hamburgers has protein in it.
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Yeah.
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Um, and and that protein has different kinds of amino acids in it.
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Um, and Micah just so happens to have a disorder where his body can't break one of those down and it it causes him to get sick.
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And and I find that to be a good starting place.
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I don't know, do you do you do you have other suggestions?
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I mean, I yeah, I uh it's it's hard to explain sometimes.
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Yeah, it definitely is hard to explain sometimes.
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And I think with talking to other people in the community, whether it's PKU, MSUD, IVA, whatever you're living with or have a family member living with, I think it's funny because we all realize that there's different ways we explain it at different times.
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Like, are we going to see this person again?
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Do I have to go into great detail?
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Or is this someone that's gonna be in my life now every day, like a teacher?
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That probably would benefit to know all the information that comes with living with PKU or IVA.
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So I think it also depends on who you're talking to at times, but I'm sure we all have like different ways of sharing through different points of individuals that we're talking to.
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Would you agree with that?
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I definitely agree with that.
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I think it's a great point.
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Um, and you know, uh, I think it also depends sometimes too.
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Um, you know, are are you talking to to grandma or grandpa who sometimes takes care of the kiddo and you have to say, hey, like um, you know, uh even that really thin slice of meat is gonna create some grief, right?
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Yeah.
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Um versus again, to your point, somebody who you just meet on the street and they're like, hey, you know, uh, you said your kid has something wrong with them.
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What is it?
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You know, it's a it's a it there's different uh versions there.
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Um and then you mentioned school.
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I mean, you and I talked pre-show a little bit about you know the importance of school nutrition.
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Uh and so that's a completely different story.
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Absolutely, absolutely.
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So could you take us back to when you first learned about Micah's diagnosis of IVA?
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How was he diagnosed?
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What do you remember most about that moment?
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And while I listen, I will try not to cry.
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Yeah, you you've had a little bit of a preview of this in our pre-show as we kind of talk through some things.
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And um, you know, I won't I won't go into too much depth, but you know, Micah was diagnosed through newborn screening.
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Um, you know, uh big shout out to to all of those uh who work uh tirelessly to make sure that newborn screening is in place.
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And um, you know, essentially, long story short, uh Micah woke up one morning, his temperature was around 97, he was cold to the touch, uh kind of bluish in the face, and and we knew something wasn't right.
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We were brand new parents, first-time parents.
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Um, and so we took him to the doctor instead of going to the ER, which was a weird decision.
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But when we got to the doctor's office, um uh miraculously his his newborn screening paperwork got faxed to the doctor's office while we were there, uh, while the the nurse and the doctor were really freaking out about his temperature.
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And the doctor came over and he's like, hey, something's really wrong.
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Like we just got the new morning screen facts back, and it says that there is an abnormality.
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And so um, you know, we we went from there to hospitals, and and I can talk more about that as we go, but the diagnosis unfortunately didn't come um before the damage was done.
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Um so on day five of life, uh, he experienced a severe metabolic crash, um, severe lethargy uh into a coma.
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And um, you know, that event fundamentally changed the course of his life and our lives.
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Um, so you know, I I remember you asked about what I remember.
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I I remember the shock, confusion, and fear.
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Um I guess, you know, as a first-time dad, it was really strange too, because um maybe there's some other dads, first-time dads listening.
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It I I think for us, it's a thing of, hey, you know, we haven't carried this baby for nine months, and like, here's a baby.
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Like, you know, it's kind of a weird realization that this is yours, right?
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So that was all part of it too.
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Um, you know, and and so uh my wife definitely felt different things than I did about it.
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And, you know, so the realization was that uh as we began to learn more, that it wasn't just a diagnosis that we had to learn about.
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Uh, we essentially learned, hey, this this doesn't go away.
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Like, this isn't like an allergy that he can grow out of.
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This this is a lifetime, lifelong condition with immediate consequences, uh, you know, that that just you know, we're we're going to be there.
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And so uh for Micah, this early crisis resulted in permanent neurological impact.
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Um for some kids it doesn't, but for him, it did.
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Uh the ammonia fried parts of his brain.
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Um, and so, you know, from that point forward, um, and we didn't know the extent of it at the time, uh, but we we you know realized over time that we weren't just navigating IVA, uh, that we were navigating long-term effects uh from metabolic injury to the brain.
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Absolutely.
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Thank you for sharing that because I know that could be difficult.
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So these early days of diagnosis, I'm sure, felt incredibly overwhelming with all the information you were given, which I'm sure many other parents could relate to while their child's being diagnosed with whatever genetic condition that they're being told their baby has.
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What are some of the biggest challenges and difficult moments that your family faced at the beginning?
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And how did you find the strength to keep moving forward?
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Yeah, I mean, I think the biggest challenge early on was just understanding the scope.
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Yeah.
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Um, you know, we we um I mentioned, you know, going to the doctor's office, we went from there to the local hospital.
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They were freaking out because they didn't know what to do.
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Great folks, but we were in we were in a rural part of our uh of our state.
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Um, and you know, we ended up going from there to to the uh the the children's hospital for the state.
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Yeah.
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Um, and they didn't know what to do either.
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They literally walked in with a stack of papers and handed them to us and said, Okay, we're pretty sure you guys IVA.
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Um, and here's your stack of papers that we know about IVA.
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And it was essentially like medical doctor research verbiage document.
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Yeah, exactly.
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Yeah, the kind of stuff, Meredith, that that that you do for school work.
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They handed them, they handed to me and and and my wife and said, here you go.
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And we realized right then that you know we were gonna have to become the experts, right?
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We we we realized right then like if if our son was gonna live, like we kind of had to take things into our own hands.
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And so I think, you know, just understanding that scope, we were learning about metabolic management while also at the same time coming to terms with the fact that Micah had an early crash that most likely he you know was gonna cause lasting intellectual disabilities.
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And and even at at the point when they handed us the papers, we didn't even know if he was gonna live, right?
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And so um, you know, we kind of had to grieve the present and even the future, uh whether that future was, you know, a funeral or or you know, a disabled child for the rest of his life or whatever that may be, uh, while simultaneously trying to fight for the care that he needed um to you know to to just survive.
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Absolutely.
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And when you say crash, what do you mean by that?
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Because um, for instance, individuals with PKU might not have a crash, as that's not likely in the first couple of days of life, for what I understand.
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So it is different with IVA.
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So if you don't mind explaining that.
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Yeah, sure, be happy to.
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So um, and again, this is stuff I can explain now because we've learned over time.
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Yeah, uh, we had we didn't, we had no idea, right?
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So for those of you listening who, you know, may you you may be listening to this, you know, uh years from now and you just realized about a diagnosis, um, is it it takes time to learn all this stuff.
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But um, you know, without but because I'm not a medical doctor, without getting into it too deep, you know, uh all of our bodies break down amino acids in the urea cycle.
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And leucine is no different.
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Um, and so for folks with IVA, when they break down leucine, um it stops about the third or fourth spot there in the leucine or in the urea cycle, uh, where it is supposed it breaks down into ammonia, and that ammonia is supposed to be broken down by an enzyme into energy um that we can use and our body can use.
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Um and that's mica's enzyme.
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Uh-huh, it it's dormant.
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It's there, it just doesn't work.
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And so um uh essentially the the crash occurs because uh the ammonia level builds up.
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So, for example, uh on day five when Micah went into his crash, me and you right now we're running an ammonia level of probably 10 or below, right?
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When if you got your blood drawn and they checked your ammonia level, it should be 10 or below.
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If it's up to 10, like you probably need to go have something checked.
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His was a thousand.
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Wow.
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So that when when I say crash, uh essentially he he had a a full body crash.
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The only thing that was functioning uh was he was his heart was beating on its own, but that was the only thing that was functioning.
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He was in renal failure, he was in uh he was he was in liver failure, um, he was not breathing on his own.
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Um, and so all of his body systems had been completely flooded with ammonia and his body crashed.
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And that put him into a coma?
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Is that correct?
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It yes, it did.
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That's correct.
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Yes.
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So his brain as well.
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So his brain uh went into a coma.
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Um, you know, and the doctors told us essentially that was the body's way of trying to protect itself as much as possible.
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Thank you so much for sharing that because that helps explain it a little bit more to us listeners and to myself with learning about IVA.
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But was there a turning point when things started to feel more manageable?
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Um, when you started to realize life could still hold joy even alongside these challenges that Micah faced and still faces today.
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Yeah, I I don't think it was one single moment.
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Yeah.
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Um, you know, it it it definitely happened gradually over time as as routines formed and especially as supports came into place.
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That's a huge deal, right?
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Yeah.
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Um uh, you know, I I'm sure that there's more than one person listening right now who felt that feeling of not only hopelessness, but helplessness, right?
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Just like I don't know where to turn.
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And so, you know, when we began to understand how Micah's metabolic stability, uh, as and I'm talking over a period of years here, uh, started we started to realize how it affected him intellectually, right?
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Uh, we started to understand how it affected his behavior, uh, anxiety, his overall well-being, and how he felt.
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Uh, I really think that's when things started to click.
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And that wasn't for years, right?
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We're talking, you know, uh until he was, you know, eight to ten years old, when we really started to kind of see, okay, here are the plethora of effects, and here is ways that we can help stabilize that.
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Um, and I think one of the biggest things for us was trying to separate medical and developmental and started treating them as connected, right?
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So I I think I told you pre-show, Meredith, that that one of the things that we we tell you asked me earlier, you said, how do you explain Micah to folks?
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And I one of the things we do is we talk about Micah from a perspective of Micah has if for people who may be listening, I've talked to in the past, they'll they'll know, yep, that's what Justin says.
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Micah has isobleric acidemia.
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And and because of that, he had a crash on day five, and it caused him his brain not to work as normal.
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And um, and so that has led to traits of autism, ADHD, high anxiety, because he had a traumatic brain injury.
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And so actually on Micah's documentation, TMI is on there, a traumatic brain injury is on, or TBI, sorry, is on there because that is really what sets off all of his other um intellectual and and other kinds of medical issues and behavioral issues that he has is because of that.
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And so we we stopped trying to separate those and we started putting them together.
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And I think that's really at the point when we began to feel things more manageable because we were able to explain things better.
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Yeah.
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Um, and you know, um as far as joy is concerned, you know, Mike has always been a joy to have around.
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It is really more of a thing of hey, like we can now see more joy in in him because we know each day better and better how to take care of him.
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Absolutely.
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That definitely makes sense.
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Nutrition plays such a strong and certain role in managing IVA and other metabolic conditions.
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How did you come to understand its importance and what difference it has made for Micah?
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Yeah, I mean, that was very early on.
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So, you know, Micah was on a TPN bag to start with.
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And for those of you who are on here and have to deal with that on a daily basis, my thoughts and prayers go out to you.
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I mean, that that is, you know, we were told early on, hey, maybe this is is life for him.
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And and for those of you who know, um, you know, for those kids who have to have essentially that liquid bag of of nutrients, um, it it is a it's a kidney killer, it's a liver killer, like it, it's it's really rough to deal with, right?
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And is that the feeding tube that you were speaking about previously, or is that something different?
00:19:12.480 --> 00:19:17.839
So, no, this would be an intravenous way of of um of feeding, yeah.
00:19:18.000 --> 00:19:21.039
And so that one is really, really, really hard on the body.
00:19:21.119 --> 00:19:27.519
Micah had that for a little bit, like for maybe about 10, 15 days when he was in the hospital.
00:19:27.599 --> 00:19:31.119
Um, but there's some kids who that's the only way they can get nutrition.
00:19:31.440 --> 00:19:31.920
Got it.
00:19:32.079 --> 00:19:41.359
Um and so, you know, we we found out real early, like, hey, like, first of all, um things things you don't know, right?
00:19:41.519 --> 00:19:46.960
There's these companies that make special formula for people who have these metabolic disorders.
00:19:47.039 --> 00:19:49.359
Yeah you know, who who knew, right?
00:19:49.680 --> 00:19:56.000
Um, and and so we found out real quick that nutrition uh is foundational for Micah.
00:19:56.079 --> 00:19:59.359
Yeah, not just his formula, but nutrition across the board.
00:19:59.519 --> 00:20:06.960
Um, and it's not just about preventing a crisis from happening, it affects his energy, it affects his focus, it affects his emotional regulation.
00:20:07.200 --> 00:20:10.480
Uh, and it also, I mean, it even affects his physical comfort.
00:20:10.640 --> 00:20:10.880
Yeah.
00:20:11.119 --> 00:20:27.440
Um and so because Micah has traumatic brain injury, which shows itself in autism, ADHD, high anxiety, and other ways, um, anything that disrupts his uh physical system really quickly ripples outward.
00:20:27.599 --> 00:20:34.240
And so when nutrition isn't right, we see it, but when nutrition is right, everything works better.
00:20:34.400 --> 00:20:41.680
Um, and so we we learned really early also um, you know, that not all formulas are created equal.
00:20:41.759 --> 00:20:42.079
Yeah.
00:20:42.240 --> 00:20:48.799
Um, and and that quality really matters, not just for metabolic control, but also for whole body health.
00:20:49.119 --> 00:20:49.839
Absolutely.
00:20:50.079 --> 00:21:01.440
Metabolically speaking, this podcast is only possible because of the amazing work that Cambrook does, and we know it's had a positive impact on so many families from their foods to formulas and more.
00:21:01.680 --> 00:21:14.799
Can you share how the formula um Mica's on, Cambrook's formula, has helped him and his day-to-day life with the difference having the right type of nutrition that he obtains now?
00:21:15.599 --> 00:21:16.319
Oh man.
00:21:16.400 --> 00:21:20.559
Uh I first of all, I I can't say enough good things about Cambrook.
00:21:20.720 --> 00:21:37.279
I mean, I'm really honored um to be here with you, Meredith, and to to be able, you know, uh I talked to the to the Cambrook team, to Susie and the team about being on the podcast and just super honored about being on here to to talk about um how they've supported Micah.
00:21:37.440 --> 00:21:41.519
Um, you know, we we we switched Micah to Cambrook Isovacton.
00:21:41.759 --> 00:21:46.319
Uh he was around, I think he was around six, somewhere around in there.
00:21:47.119 --> 00:21:53.759
Um and um, you know, we saw changes pretty much immediately.
00:21:54.000 --> 00:22:09.359
Um issues that had been persistent for him, um, from halitosis to runny stool, stomach aches, other GI related problems, um those all resolved once he was on isobactin.
00:22:09.440 --> 00:22:21.119
And again, um yeah, it you know it's it's one of those things that, you know, it's uh not the same for everybody, but but for for him, um, it was a marked difference.
00:22:22.240 --> 00:22:33.440
Um and you know, I I know you mered this as well as a as you know someone we talked about the again talk about this pre-show like as someone who who's you know uses Cambert products as well.
00:22:33.519 --> 00:22:33.920
Yes.
00:22:34.079 --> 00:22:46.559
Um I think you would agree like there is a there there there is a quality difference there um that is is really different even even from from a perspective of taste and smell and those kind of things too.
00:22:46.799 --> 00:23:22.559
Absolutely definitely for in the food and formula bulk that's right that's right that's right so you know what that you know essentially what that told us as as you know we saw Micah make that transition is it wasn't just about meeting minimum nutrition requirements right yeah uh Cambrook has a focus on quality and and tolerability right that made a real difference for Micah and his comfort and his overall health um which you know he he's got enough to deal with right if we can make one if we can make a small thing easier and and drinking formula multiple times a day isn't a small thing.
00:23:22.640 --> 00:23:40.079
Yes um so you know I I I I just want to shout out Cambrook care you know can't can't say enough about the Cambrook care folks um you know from from Kelly and the team in AR to Barb and the and the team over that that you know that call me and say hey we got to get his stuff ready to ship out.
00:23:40.240 --> 00:24:10.480
Yeah just everybody's just fantastic and and you know they've really helped us navigate everything from insurance coverage and access which I could do a whole podcast on um to you know uh to to just making sure that that that Micah is is well taken care of yeah and I've never talked to any of them where they haven't said hey how is Micah how's he doing how how are things is there anything we can do for you and and that means a huge deal to parents absolutely you kind of beat me to the next question but this is great.
00:24:10.640 --> 00:26:06.880
How did Canbra Care help you navigate access and coverage for Micah's products whether that's his suit and or his formula and how did that affect you and your family yeah so um you know essentially Canberra Care um they they essentially help to take the um the the hard stuff out of trying to navigate all of this um for for those of you listening who either yourself Meredith like yourself or who have a child with uh metabolic disorders and have to go through the the formula race uh every time I say the word insurance you're going to cringe and you're gonna kind of maybe uh feel a little sick to your stomach uh and that's all of us you're not alone um that this stuff is very difficult to navigate and and Canberra care has been great and hey they're proactive um they they make sure that all the documentation is in place they reach out to your physicians um they they work with the insurance companies um you know so so uh I I I think the one thing I would just say is if you have trouble with any of those things and you're utilizing a Cambrook product reach out to the care team because uh it the the name is not made up they really do care uh and and they they have taken very good care of us uh and taken good care of Micah and made sure that even in times where I've called and and and and probably the Cambrook folks are listening are gonna kind of chuckle at me I've called and I've said hey I messed up and forgot to call in an order and uh we you know this was before we started doing auto renewals of something about our insurance and I'm I'm down to like the last five of these these these packets of formula and you know and they're like hey Justin you're good like we're gonna overnight you some of it and then we'll get you I mean that's huge.
00:26:07.119 --> 00:26:07.680
That's huge.
00:26:07.759 --> 00:26:17.599
And and and uh and they've done that for us and they've kept him uh that they've kept him alive that Micah is alive and and not only alive but thriving because of Canberra care.
00:26:17.920 --> 00:26:19.119
That's amazing.
00:26:19.440 --> 00:26:26.640
This podcast is all about community and celebrating the support available to individuals and families living with metabolic conditions.
00:26:26.799 --> 00:26:30.240
And what you're explaining is truly proof of that.
00:26:30.480 --> 00:26:38.000
We know that people, resources, and organizations play a large role in making this journey feel less lonely and daunting.
00:26:38.240 --> 00:26:47.359
What resources and organizations have been most important to you on this journey with Micah having IVA and why yeah great question.
00:26:47.920 --> 00:26:49.119
It is all about community.
00:26:49.200 --> 00:27:03.599
I I tell people all the time it's all about people right it's a it's about finding the right person and Meredith I could probably ask you hey tell me about some people in your life who have made a difference in your metabolic journey.
00:27:03.680 --> 00:27:05.680
Yep and you could probably start listing names.
00:27:05.839 --> 00:27:27.039
Yep absolutely yeah for sure I think everyone that is listening and lives with a metabolic condition could do that as well as the parents because the parents like we're talking about you have a journey of IVA but that journey yes it's just like Micah's but also it's different than Micah's.
00:27:27.279 --> 00:27:35.680
You guys are living with IBA in different ways just like I'm living with PKU in different ways versus my family and everyone else that's listening.
00:27:35.839 --> 00:27:46.160
So I think it's very um exciting that we all have our people in our corner and our people in our community that we can list off like you're explaining.
00:27:46.799 --> 00:27:49.519
Agree 100% so community is key.
00:27:49.599 --> 00:30:05.359
Yeah right community is essential and so um you know some some organizations that that that we're you know that we follow closely and are a part of um the organic acidemia association um so many of you probably have heard of Kathy and the crew over there um fantastic right so um you know back when mica was first born um there really wasn't a whole lot on the internet about it wasn't the same internet as today right um I couldn't just go out and ask chat gpt about it so um you know there there uh there was uh um you know Facebook and so we went out to Facebook and we started looking around and we tried to search and find out and we and we came across organic acidemia association and I think I think there were some folks um shout outs of the great folks at Cincinnati Children's um I think there were some folks there that pointed us in the right direction and and so we started following them and some of the posts that they put out and and we soon became part of a group and there were other people in the group who um you know had similar struggles as us and so over uh over time we've been able Mike has had some articles in the OAA newsletter and and we kept really close uh ties with with Kathy and the group over there and and and just just a great if you haven't checked them out uh for all those of you with organic acidemias um please do so um Nord is another one right um that's the that's the the national organization on um rare disorders rare disorders yeah yeah rare diseases or rare disorders um if if you're in the advocacy right um which I think all of us probably are in some way or another uh if we take care of ourselves or our kiddos um sign up for their newsletters they'll keep you abreast on hey here is things going on in the nation and in your state um having to do with uh rare disease rare disorders and uh actual uh legislation and law uh that you can write your senators and your congress uh folks about um and say hey like I live this right and and I've had I've had the opportunity to have sit-down conversations with with senators and congresspeople about these things because uh of information I've received from Nord.
00:30:05.519 --> 00:30:06.880
So huge stuff there.
00:30:07.119 --> 00:30:11.920
Um the newborn screening system that that community has been essential.
00:30:12.240 --> 00:30:30.480
We got folks like Janemonico uh and and others who are driving that across the nation to say hey it's important for these kids to have newborn screening done early and for all of the organic acidemias to be put into play and so um and and lastly we've already talked about them but Canberra Care.
00:30:30.559 --> 00:30:34.240
Canberra care is is you know been big community for us.
00:30:34.319 --> 00:30:39.759
And so these groups have not only provided information to us but even more so connection.
00:30:39.920 --> 00:30:45.200
Absolutely they help remind us that we're not alone right and and that's a that's a big deal.
00:30:45.440 --> 00:31:00.400
Yes and I can't wait to hopefully meet you guys someday at one of these community meetings whether that's newborn screening related Nord related maybe a flock camp someday I'd love to see you guys and be in person.
00:31:01.440 --> 00:31:31.119
As a parent and an advocate what are your hopes for Micah's future and for the wider metabolic community in terms of awareness support and opportunity every time somebody asks me this I I start off with my canned phrase um my canned phrase is we want Micah to be the best citizen that he can be that that's that's my canned phrase that I tell everyone I think I may have even told you that in the pre-show is that we just want Micah to be the best citizen he can be.
00:31:39.839 --> 00:31:42.160
And and look at what you're doing right it's great.
00:31:42.400 --> 00:32:32.720
And so you know we we want stability for him uh dignity uh quality of life um and we want you know for him to have the supports that he needs that recognize both his medical and his intellectual needs um and you know it also makes me think about the broader metabolic community right I I I really do hope for increased awareness um for better access to high quality nutrition um you know I I hate to see the letters that come out from Cambrook where they say hey you know we're having a hard time getting products for this and this getting we're trying a hard time getting g getting the the pieces of the puzzle we need to make these products because of the current environment right um that that's sad right that's there's somebody out there who's not getting what they need because of that.
00:32:32.799 --> 00:32:40.960
And so um you know systems that understand rare conditions and that those rare conditions don't neatly fit into standard boxes.
00:32:41.359 --> 00:32:48.720
Absolutely you know and really at the end of the day uh families shouldn't have to fight so hard to get what the children need.
00:32:48.880 --> 00:33:01.599
Um and that's my hope is that you know we can continue to work on that uh so that we can get what our kiddos need uh regardless of whether or not they have a rare disease uh without having to put so much time into fighting for it.
00:33:01.839 --> 00:34:52.400
Absolutely and you mentioning the parents for parents listening who maybe at the very beginning of their journey like you were with Micah feeling worried overwhelmed unsure and many other feelings what is a message that you'd want them to take away from this episode today yeah this is hard um but you know if you're at the beginning of this journey the the most important thing I want you to hear today is this um you're not felon and also you're not alone so you know right now everything probably feels overwhelming um too much information like I said those people brought that big pack of stack of papers to us and said here you go too much information too many decisions um you know Meredith on on day five I I the doctors walked up to us and they had all you know all these big words and things and I said hey I said I I don't know any of what you're talking about I said only I only have one question for you when do I need this when when do I need to start thinking about a funeral for our son that was my question for them on day five and some of you have probably asked that same question uh too many decisions too much uncertainty and guess what that's normal that's normal in these situations it doesn't feel normal to start with but it's normal so you don't have to have everything figured out today you also don't need to know what the next 10 years looks like because I don't even know that for Micah right I try to look ahead but I don't know all you need to do is take the next right step for your kiddo for your family member for whoever it is you're taking care of and then take the next right one after that and and what's gonna happen is that's gonna form routines and support's gonna grow and confidence is going to come um but you're not failing.
00:34:53.920 --> 00:35:04.800
Just remember that you know if if you don't get anything out of any of this your your child or your loved one whoever it is you're helping take care of they're they're much more than a diagnosis.
00:35:05.199 --> 00:35:15.599
Absolutely I I don't I don't tell people you know Micah Hensley comma IVA like it's not it's not a degree hold it's not it it it doesn't define him.
00:35:16.159 --> 00:36:14.800
And so your your your kid is more than the diagnosis and also you are too you're more than that diagnosis as a parent um as a caregiver and um it it you know it definitely will change the way that you function but it does not have to define you uh and and um and and you can move forward well that's incredible the words you've said and you said the statement that made me cry last time the funeral statement but it's true it's the real life situation that you guys were in and now Micah is thriving today and doing wonderful and beautiful and I hope I'm able to meet him someday would love that but going from there we just want to thank you thank you so much for joining us today Justin Cambrick thanks you I thank you we're very appreciative and for sharing both your story and Micah's journey through living with IVA.
00:36:15.039 --> 00:36:22.239
It's been inspiring to hear about how the early challenges your family has faced and what daily life sounds like it is now.
00:36:22.400 --> 00:36:30.159
The moments that are highlighted from how well Micah is thriving to also hearing about the difficulties that you guys have faced as a family.
00:36:30.400 --> 00:36:48.239
We've loved hearing your insights on the role of nutrition, how you have been supported and how you're supporting the community with the care team here at Cambrook and the organizations as well how community can make such a difference in your families and other families with metabolic conditions' lives.
00:36:48.480 --> 00:36:56.639
Your story is powerful reminding of resilience connection and hope that families can navigate life with a rare metabolic condition.
00:36:58.960 --> 00:39:11.599
Now it's time for a fun part our community conversations in this segment we'll ask you questions that were submitted giving a chance for us to explore um some of the guests stories from new and personal perspectives today we have a few questions from you actually from the Cambrook team some people you know Bridget and Susie so Bridget has a question she said how do you as a parent approach advocating for your son from school to his daily needs it's it's uh it it takes a village um so um you know I I've I've been blessed with you know kind of the um I guess a uh a a trait of being able to just be rather blunt and and sometimes that's what's needed in some cases um also my my wife is really good at kind of uh helping uh soften the that sometimes if needed but yeah soften the blow a little bit um I I think I think the biggest thing I would say is just don't be afraid to advocate right I I I can't tell you the number of people that I that I work with and and and I also have the opportunity I'm I'm I'm a trained IEP advocate um and so I get the opportunity to help people with IEP advocacy as well to analyze uh the individualized education plans um I have spoken before school boards I've spoken before um state school uh state education boards about this um and I I think it really is a thing of hey if if you have that trait to be able to advocate then go do it if if you don't have that trait to be super blunt and forward and and advocate like that go find somebody that can right and and and and and help help them help you um because the the worst thing that you can do is not advocate at all because that doesn't help you it doesn't help your kid and the number one thing I've learned is that if one of my kids needs advocacy for something there's a really good chance that somebody else's kid does too.
00:39:11.760 --> 00:39:15.519
Yep absolutely that is definitely true.
00:39:15.840 --> 00:40:59.920
For the next question Susie who you know from the Cambrook team asked what's your favorite memory with Micah that reminds you how far you guys have come well good question Susie and thank you susie for all you do uh shout out from the Hensley family um so you know I it's a very recent memory um it it actually happened this week um you know so you know we we remember and I told you on this podcast right I mean you know I've got pictures of of Micah laying lifeless on a on a table you know and I mean you know we we those pictures remain in our minds yeah um and when you when you see those pictures when you think about when you take them you know you you you don't know again what's coming next what comes in a month what comes in a year what comes in five or ten years you know and um you know mica has has had his share of of struggles he continues to um but you know uh this week he he goes uh at school this week at school he he he got up in front of the whole assembly and he read a poem he read a poem about about mark uh for about martin luther king uh uh about dr king for for for his for dr king's birthday and and you know to and and you know I don't I don't want to sugarcoat anything like you know he he had help reading it like Micah doesn't read like he had help reading it and um you know he was there with a lot of other peers that also have intellectual disabilities um and so you know it I'm not saying he got up in front of a you know in front of a huge crowd of people and and you know read flawlessly but but Micah did something that I didn't think Micah would ever do.
00:41:00.079 --> 00:41:59.840
You know he he he stood up in front of a group of people and was was able to to to recite a small short poem to them with help and just to see all the other kids in the room some of them who can't stand up some of them who can't um feed themselves some of them who who um you know who have all kinds of myriad of disabilities and any of those things could have been him and we're talking about a difference of five fifteen twenty minutes an hour when he was a little baby any of those could things could have been him and so just to see how far he come he's come you know to be able to do those kind of things um and to tie this back around since it's Susie's question is because of people like Susie who have who have made sure that that that mica has had the formula he needs to help him grow physically and mentally and and emotionally and and that has that's what has brought us here.
00:41:59.920 --> 00:42:08.719
And and so um you know that that is that's what I get to see even on a weekly basis he he just you know surprises us with things he can do.
00:42:08.960 --> 00:42:16.719
That's beautiful and I think it's funny how we were going to record this episode previously I believe to that happening.
00:42:16.960 --> 00:42:22.320
So I think recording today was meant to be so you'd have this story.
00:42:23.199 --> 00:43:16.400
It's exactly right I I thought about that the other day when I was watching him uh and you know we kind of had our pre-show over the weekend and um uh yeah it was it was amazing to get to watch him do that and and I know that I know that that my answer probably mimics it Meredith if we were to talk to your your family they would mimic similar things hey we didn't think Meredith would would would be able to do these things yeah right and and there's so many people that are listening and and they see their loved ones and they're like hey whether it's something really big like hey my daughter does a podcast now or whether it's something really small like hey um you know my my loved one was supposed to pass away when they were very young and now they're they're 10 or 15 or 20 there there's all kinds of different stories like that across across our ecosystem that are just amazing.
00:43:16.719 --> 00:43:34.960
Absolutely well thank you Justin for answering the community conversation questions today that is all for the community conversations if you'd like to include a question in the future episodes keep an eye out on social media for our posts and I'll regularly ask the community for their input.
00:43:35.360 --> 00:43:56.880
As we wrap up today's show remember that you can find helpful resources as well as more information from Justin in the show notes below thank you for listening and we'll see you next time that is it for today's episode of Metabolically speaking rare conditions, real stories and a reminder that life with a metabolic condition is about living, not limits.
00:43:57.519 --> 00:44:01.840
If today's episode resonated with you share it with someone who might need to hear it.
00:44:02.079 --> 00:44:04.239
And if you have a moment leave us a review.
00:44:04.400 --> 00:44:08.960
It helps others find their way here too we'd love to hear from you.
00:44:09.119 --> 00:44:25.199
If you have feedback a story to share or a question send us an email you'll find the email address in the show notes below make sure to subscribe to Metabolically speaking on your favorite podcast platform and tune in each month to join your tribe breaking barriers and living without limits.
00:44:25.440 --> 00:44:28.079
Thanks for being here and we'll see you next time
00:00:04.480 --> 00:00:09.119
Justin Hensley is a devoted father and advocate in the metabolic community.
00:00:09.359 --> 00:00:13.919
Sharing the story of his son Micah, who is living with isovoleric acidemia.
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When Micah was first diagnosed, life felt uncertain.
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Today, he's thriving thanks to the right nutrition and a strong support network.
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What began as an overwhelming diagnosis has become a journey defined by resilience, nutrition, and the power of community.
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In this episode, we explore Micah's daily life with IVA, the pivotal moments that proved that he was thriving, and the vital role of nutrition, advocacy organizations, and a support network in helping families navigate rare conditions.
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Devilina joined us for this heartfelt conversation on metabolically speaking.
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You'll be reminded that with the right care, advocacy, and community, families facing metabolic conditions can help children truly thrive.
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Welcome to Metabolically Speaking, a podcast that dives into life with inherited metabolic conditions.
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Proudly brought to you by Canbrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
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I'm your host, Meredith Baker.
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I've lived with PPU my whole life, so I know the ups and downs and all the in-between moments that come with navigating a rare condition.
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Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition.
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Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
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So settle in and let's get into it.
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Welcome everyone to our sixth episode of Metabolically Speaking.
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Joining me today is Justin Hensley, a father navigating life with his son Micah, who has IVA.
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Justin shares the everyday realities of parenting with a child with a rare metabolic condition from managing routines and nutrition to celebrating small victories and milestones along the way.
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Throughout his journey, Justin has learned firsthand the value of community, resources, support networks, and he shares his experiences to encourage and guide other families facing similar challenges.
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Justin, we are so thrilled to have you here today.
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Thank you, Meredith, for having me.
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It's an honor to be here with you.
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We are truly excited to have you, and we're excited for the topics that we have planned today.
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All about resilience for yourself and your son Micah, the power of connection, and how families can face challenges, support each other, and thrive together.
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Are you ready, Justin?
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Sure am.
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Perfect.
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So to kick us off, could you introduce yourself and share a little bit about Micah, who he is, and why you're sharing his story today?
00:03:00.960 --> 00:03:01.840
Sure, Mary just.
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My name is Justin Hensley.
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Uh and again, I'm Micah's dad.
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Micah's a teenager now.
00:03:08.800 --> 00:03:09.919
Kind of hard to believe.
00:03:10.560 --> 00:03:18.080
He's uh kiddova with a great sense of humor, uh, strong preferences, and just a personality that fills the room.
00:03:18.560 --> 00:03:25.599
And as you mentioned, uh he has been diagnosed with isophaleric acidemia, and we'll just call it IVA because it's a mouthful.
00:03:25.919 --> 00:03:30.159
Uh and it's uh it's a rare inherited metabolic disorder.
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Um I I I like to share Micah's story of IVA because it doesn't just affect his lab values or his diet, it it affects the whole person.
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Uh, and it also affects the whole family.
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Uh so Micah's journey not only uh it includes not only managing a metabolic condition that he has, but also navigating uh intellectual disabilities that resulted from a severe metabolic crash on day five of life.
00:04:00.319 --> 00:04:12.080
Um so for those who are unfamiliar uh with IVA, uh it's a disorder where the body can't properly break down the amino acid leucine.
00:04:12.159 --> 00:04:14.240
Uh so there's all kinds of different ones.
00:04:14.400 --> 00:04:16.160
His has to do with leucine.
00:04:16.480 --> 00:04:28.720
And when that process fails, uh toxic byproducts, which in his case is ammonia, uh builds up and it can cause a metabolic crisis, uh, which it did for him severely on day five.
00:04:28.800 --> 00:04:39.680
Um so without careful management throughout the life of a person with IVA, those crises can be life-threatening uh and can cause uh permanent neurological damage.
00:04:39.759 --> 00:04:44.639
Um so that makes nutrition uh and early intervention absolutely critical.
00:04:45.120 --> 00:04:45.759
Absolutely.
00:04:45.920 --> 00:04:47.439
Thank you for sharing that, Justin.
00:04:47.600 --> 00:04:49.360
And I'm sure we'll get more into it.
00:04:49.439 --> 00:04:55.120
Is there an easy way or a quick way you explain IVA to the average person?
00:04:56.480 --> 00:05:01.120
Yeah, I think you know, a lot of people are are used to talking about allergies.
00:05:01.199 --> 00:05:01.439
Yeah.
00:05:01.600 --> 00:05:01.839
Right.
00:05:02.079 --> 00:05:05.439
So um, and maybe this is the same for you, Meredith.
00:05:05.600 --> 00:05:06.319
I I'm not sure.
00:05:06.399 --> 00:05:12.399
Maybe you know you could provide some insight here on how you talk about uh a PKU is similar but different.
00:05:12.560 --> 00:05:26.000
Um, but for a lot of people who don't understand, I I essentially start with, hey, like everything that we consume for the most part, uh, from orange juice to to hamburgers has protein in it.
00:05:26.079 --> 00:05:26.319
Yeah.
00:05:26.480 --> 00:05:31.439
Um, and and that protein has different kinds of amino acids in it.
00:05:31.839 --> 00:05:41.439
Um, and Micah just so happens to have a disorder where his body can't break one of those down and it it causes him to get sick.
00:05:41.519 --> 00:05:43.920
And and I find that to be a good starting place.
00:05:44.079 --> 00:05:46.160
I don't know, do you do you do you have other suggestions?
00:05:46.319 --> 00:05:48.879
I mean, I yeah, I uh it's it's hard to explain sometimes.
00:05:49.120 --> 00:05:51.360
Yeah, it definitely is hard to explain sometimes.
00:05:51.439 --> 00:06:06.160
And I think with talking to other people in the community, whether it's PKU, MSUD, IVA, whatever you're living with or have a family member living with, I think it's funny because we all realize that there's different ways we explain it at different times.
00:06:06.319 --> 00:06:08.000
Like, are we going to see this person again?
00:06:08.160 --> 00:06:10.079
Do I have to go into great detail?
00:06:10.240 --> 00:06:13.759
Or is this someone that's gonna be in my life now every day, like a teacher?
00:06:13.920 --> 00:06:19.519
That probably would benefit to know all the information that comes with living with PKU or IVA.
00:06:19.680 --> 00:06:30.240
So I think it also depends on who you're talking to at times, but I'm sure we all have like different ways of sharing through different points of individuals that we're talking to.
00:06:30.399 --> 00:06:31.680
Would you agree with that?
00:06:32.079 --> 00:06:33.040
I definitely agree with that.
00:06:33.120 --> 00:06:34.319
I think it's a great point.
00:06:34.480 --> 00:06:38.240
Um, and you know, uh, I think it also depends sometimes too.
00:06:38.319 --> 00:06:51.839
Um, you know, are are you talking to to grandma or grandpa who sometimes takes care of the kiddo and you have to say, hey, like um, you know, uh even that really thin slice of meat is gonna create some grief, right?
00:06:52.000 --> 00:06:52.240
Yeah.
00:06:52.480 --> 00:07:00.720
Um versus again, to your point, somebody who you just meet on the street and they're like, hey, you know, uh, you said your kid has something wrong with them.
00:07:00.800 --> 00:07:01.199
What is it?
00:07:01.279 --> 00:07:04.879
You know, it's a it's a it there's different uh versions there.
00:07:04.959 --> 00:07:06.399
Um and then you mentioned school.
00:07:06.720 --> 00:07:11.199
I mean, you and I talked pre-show a little bit about you know the importance of school nutrition.
00:07:11.519 --> 00:07:13.279
Uh and so that's a completely different story.
00:07:14.319 --> 00:07:15.839
Absolutely, absolutely.
00:07:16.000 --> 00:07:20.959
So could you take us back to when you first learned about Micah's diagnosis of IVA?
00:07:21.120 --> 00:07:22.399
How was he diagnosed?
00:07:22.480 --> 00:07:24.319
What do you remember most about that moment?
00:07:24.480 --> 00:07:27.120
And while I listen, I will try not to cry.
00:07:29.040 --> 00:07:34.480
Yeah, you you've had a little bit of a preview of this in our pre-show as we kind of talk through some things.
00:07:34.560 --> 00:07:40.319
And um, you know, I won't I won't go into too much depth, but you know, Micah was diagnosed through newborn screening.
00:07:40.480 --> 00:07:50.079
Um, you know, uh big shout out to to all of those uh who work uh tirelessly to make sure that newborn screening is in place.
00:07:50.240 --> 00:08:02.399
And um, you know, essentially, long story short, uh Micah woke up one morning, his temperature was around 97, he was cold to the touch, uh kind of bluish in the face, and and we knew something wasn't right.
00:08:02.560 --> 00:08:04.639
We were brand new parents, first-time parents.
00:08:04.720 --> 00:08:10.000
Um, and so we took him to the doctor instead of going to the ER, which was a weird decision.
00:08:10.240 --> 00:08:24.639
But when we got to the doctor's office, um uh miraculously his his newborn screening paperwork got faxed to the doctor's office while we were there, uh, while the the nurse and the doctor were really freaking out about his temperature.
00:08:24.879 --> 00:08:27.199
And the doctor came over and he's like, hey, something's really wrong.
00:08:27.360 --> 00:08:31.759
Like we just got the new morning screen facts back, and it says that there is an abnormality.
00:08:31.839 --> 00:08:43.279
And so um, you know, we we went from there to hospitals, and and I can talk more about that as we go, but the diagnosis unfortunately didn't come um before the damage was done.
00:08:43.360 --> 00:08:52.320
Um so on day five of life, uh, he experienced a severe metabolic crash, um, severe lethargy uh into a coma.
00:08:52.559 --> 00:08:57.519
And um, you know, that event fundamentally changed the course of his life and our lives.
00:08:57.679 --> 00:09:01.120
Um, so you know, I I remember you asked about what I remember.
00:09:01.200 --> 00:09:03.679
I I remember the shock, confusion, and fear.
00:09:04.159 --> 00:09:12.799
Um I guess, you know, as a first-time dad, it was really strange too, because um maybe there's some other dads, first-time dads listening.
00:09:12.879 --> 00:09:19.360
It I I think for us, it's a thing of, hey, you know, we haven't carried this baby for nine months, and like, here's a baby.
00:09:19.440 --> 00:09:24.080
Like, you know, it's kind of a weird realization that this is yours, right?
00:09:24.320 --> 00:09:26.320
So that was all part of it too.
00:09:26.480 --> 00:09:31.679
Um, you know, and and so uh my wife definitely felt different things than I did about it.
00:09:31.759 --> 00:09:39.360
And, you know, so the realization was that uh as we began to learn more, that it wasn't just a diagnosis that we had to learn about.
00:09:39.519 --> 00:09:43.200
Uh, we essentially learned, hey, this this doesn't go away.
00:09:43.279 --> 00:09:45.840
Like, this isn't like an allergy that he can grow out of.
00:09:46.000 --> 00:09:55.039
This this is a lifetime, lifelong condition with immediate consequences, uh, you know, that that just you know, we're we're going to be there.
00:09:55.120 --> 00:10:00.399
And so uh for Micah, this early crisis resulted in permanent neurological impact.
00:10:00.639 --> 00:10:03.919
Um for some kids it doesn't, but for him, it did.
00:10:04.080 --> 00:10:06.879
Uh the ammonia fried parts of his brain.
00:10:06.960 --> 00:10:22.159
Um, and so, you know, from that point forward, um, and we didn't know the extent of it at the time, uh, but we we you know realized over time that we weren't just navigating IVA, uh, that we were navigating long-term effects uh from metabolic injury to the brain.
00:10:22.480 --> 00:10:23.039
Absolutely.
00:10:23.200 --> 00:10:25.919
Thank you for sharing that because I know that could be difficult.
00:10:26.159 --> 00:10:41.759
So these early days of diagnosis, I'm sure, felt incredibly overwhelming with all the information you were given, which I'm sure many other parents could relate to while their child's being diagnosed with whatever genetic condition that they're being told their baby has.
00:10:42.000 --> 00:10:46.480
What are some of the biggest challenges and difficult moments that your family faced at the beginning?
00:10:46.639 --> 00:10:49.759
And how did you find the strength to keep moving forward?
00:10:50.639 --> 00:10:54.480
Yeah, I mean, I think the biggest challenge early on was just understanding the scope.
00:10:54.639 --> 00:10:54.960
Yeah.
00:10:55.279 --> 00:11:03.120
Um, you know, we we um I mentioned, you know, going to the doctor's office, we went from there to the local hospital.
00:11:03.600 --> 00:11:06.000
They were freaking out because they didn't know what to do.
00:11:06.240 --> 00:11:10.960
Great folks, but we were in we were in a rural part of our uh of our state.
00:11:11.519 --> 00:11:17.919
Um, and you know, we ended up going from there to to the uh the the children's hospital for the state.
00:11:18.080 --> 00:11:18.399
Yeah.
00:11:18.480 --> 00:11:22.080
Um, and they didn't know what to do either.
00:11:22.240 --> 00:11:28.799
They literally walked in with a stack of papers and handed them to us and said, Okay, we're pretty sure you guys IVA.
00:11:28.960 --> 00:11:32.080
Um, and here's your stack of papers that we know about IVA.
00:11:32.159 --> 00:11:36.240
And it was essentially like medical doctor research verbiage document.
00:11:36.559 --> 00:11:37.120
Yeah, exactly.
00:11:37.279 --> 00:11:40.639
Yeah, the kind of stuff, Meredith, that that that you do for school work.
00:11:40.960 --> 00:11:46.320
They handed them, they handed to me and and and my wife and said, here you go.
00:11:46.559 --> 00:11:51.360
And we realized right then that you know we were gonna have to become the experts, right?
00:11:51.440 --> 00:11:58.480
We we we realized right then like if if our son was gonna live, like we kind of had to take things into our own hands.
00:11:58.559 --> 00:12:14.639
And so I think, you know, just understanding that scope, we were learning about metabolic management while also at the same time coming to terms with the fact that Micah had an early crash that most likely he you know was gonna cause lasting intellectual disabilities.
00:12:14.799 --> 00:12:20.720
And and even at at the point when they handed us the papers, we didn't even know if he was gonna live, right?
00:12:20.879 --> 00:12:43.120
And so um, you know, we kind of had to grieve the present and even the future, uh whether that future was, you know, a funeral or or you know, a disabled child for the rest of his life or whatever that may be, uh, while simultaneously trying to fight for the care that he needed um to you know to to just survive.
00:12:43.440 --> 00:12:44.000
Absolutely.
00:12:44.159 --> 00:12:47.039
And when you say crash, what do you mean by that?
00:12:47.360 --> 00:12:56.080
Because um, for instance, individuals with PKU might not have a crash, as that's not likely in the first couple of days of life, for what I understand.
00:12:56.320 --> 00:12:58.480
So it is different with IVA.
00:12:58.559 --> 00:13:00.480
So if you don't mind explaining that.
00:13:01.039 --> 00:13:02.399
Yeah, sure, be happy to.
00:13:02.480 --> 00:13:07.039
So um, and again, this is stuff I can explain now because we've learned over time.
00:13:07.120 --> 00:13:09.519
Yeah, uh, we had we didn't, we had no idea, right?
00:13:09.679 --> 00:13:21.200
So for those of you listening who, you know, may you you may be listening to this, you know, uh years from now and you just realized about a diagnosis, um, is it it takes time to learn all this stuff.
00:13:21.360 --> 00:13:32.000
But um, you know, without but because I'm not a medical doctor, without getting into it too deep, you know, uh all of our bodies break down amino acids in the urea cycle.
00:13:32.960 --> 00:13:35.039
And leucine is no different.
00:13:35.200 --> 00:13:55.759
Um, and so for folks with IVA, when they break down leucine, um it stops about the third or fourth spot there in the leucine or in the urea cycle, uh, where it is supposed it breaks down into ammonia, and that ammonia is supposed to be broken down by an enzyme into energy um that we can use and our body can use.
00:13:55.840 --> 00:13:58.159
Um and that's mica's enzyme.
00:13:58.240 --> 00:14:00.799
Uh-huh, it it's dormant.
00:14:00.879 --> 00:14:02.559
It's there, it just doesn't work.
00:14:02.799 --> 00:14:10.320
And so um uh essentially the the crash occurs because uh the ammonia level builds up.
00:14:10.480 --> 00:14:19.440
So, for example, uh on day five when Micah went into his crash, me and you right now we're running an ammonia level of probably 10 or below, right?
00:14:19.600 --> 00:14:23.759
When if you got your blood drawn and they checked your ammonia level, it should be 10 or below.
00:14:23.840 --> 00:14:26.720
If it's up to 10, like you probably need to go have something checked.
00:14:27.200 --> 00:14:28.320
His was a thousand.
00:14:28.559 --> 00:14:29.200
Wow.
00:14:29.759 --> 00:14:35.679
So that when when I say crash, uh essentially he he had a a full body crash.
00:14:35.840 --> 00:14:42.320
The only thing that was functioning uh was he was his heart was beating on its own, but that was the only thing that was functioning.
00:14:42.480 --> 00:14:50.080
He was in renal failure, he was in uh he was he was in liver failure, um, he was not breathing on his own.
00:14:50.159 --> 00:14:56.480
Um, and so all of his body systems had been completely flooded with ammonia and his body crashed.
00:14:56.720 --> 00:14:58.240
And that put him into a coma?
00:14:58.399 --> 00:14:59.039
Is that correct?
00:14:59.279 --> 00:15:00.320
It yes, it did.
00:15:00.399 --> 00:15:00.879
That's correct.
00:15:00.960 --> 00:15:01.200
Yes.
00:15:01.279 --> 00:15:02.559
So his brain as well.
00:15:02.720 --> 00:15:04.960
So his brain uh went into a coma.
00:15:05.120 --> 00:15:11.039
Um, you know, and the doctors told us essentially that was the body's way of trying to protect itself as much as possible.
00:15:11.279 --> 00:15:17.840
Thank you so much for sharing that because that helps explain it a little bit more to us listeners and to myself with learning about IVA.
00:15:18.159 --> 00:15:21.919
But was there a turning point when things started to feel more manageable?
00:15:22.080 --> 00:15:29.919
Um, when you started to realize life could still hold joy even alongside these challenges that Micah faced and still faces today.
00:15:31.039 --> 00:15:33.759
Yeah, I I don't think it was one single moment.
00:15:34.080 --> 00:15:34.399
Yeah.
00:15:34.720 --> 00:15:43.039
Um, you know, it it it definitely happened gradually over time as as routines formed and especially as supports came into place.
00:15:43.200 --> 00:15:44.159
That's a huge deal, right?
00:15:44.240 --> 00:15:44.559
Yeah.
00:15:44.799 --> 00:15:56.080
Um uh, you know, I I'm sure that there's more than one person listening right now who felt that feeling of not only hopelessness, but helplessness, right?
00:15:56.240 --> 00:15:58.559
Just like I don't know where to turn.
00:15:58.639 --> 00:16:10.639
And so, you know, when we began to understand how Micah's metabolic stability, uh, as and I'm talking over a period of years here, uh, started we started to realize how it affected him intellectually, right?
00:16:11.039 --> 00:16:18.879
Uh, we started to understand how it affected his behavior, uh, anxiety, his overall well-being, and how he felt.
00:16:18.960 --> 00:16:21.200
Uh, I really think that's when things started to click.
00:16:21.279 --> 00:16:23.200
And that wasn't for years, right?
00:16:23.279 --> 00:16:38.799
We're talking, you know, uh until he was, you know, eight to ten years old, when we really started to kind of see, okay, here are the plethora of effects, and here is ways that we can help stabilize that.
00:16:38.960 --> 00:16:48.879
Um, and I think one of the biggest things for us was trying to separate medical and developmental and started treating them as connected, right?
00:16:49.120 --> 00:16:56.559
So I I think I told you pre-show, Meredith, that that one of the things that we we tell you asked me earlier, you said, how do you explain Micah to folks?
00:16:56.639 --> 00:17:07.599
And I one of the things we do is we talk about Micah from a perspective of Micah has if for people who may be listening, I've talked to in the past, they'll they'll know, yep, that's what Justin says.
00:17:07.839 --> 00:17:10.480
Micah has isobleric acidemia.
00:17:10.720 --> 00:17:19.839
And and because of that, he had a crash on day five, and it caused him his brain not to work as normal.
00:17:20.240 --> 00:17:31.599
And um, and so that has led to traits of autism, ADHD, high anxiety, because he had a traumatic brain injury.
00:17:31.759 --> 00:17:49.920
And so actually on Micah's documentation, TMI is on there, a traumatic brain injury is on, or TBI, sorry, is on there because that is really what sets off all of his other um intellectual and and other kinds of medical issues and behavioral issues that he has is because of that.
00:17:50.079 --> 00:17:54.480
And so we we stopped trying to separate those and we started putting them together.
00:17:54.640 --> 00:18:01.920
And I think that's really at the point when we began to feel things more manageable because we were able to explain things better.
00:18:02.000 --> 00:18:02.319
Yeah.
00:18:02.480 --> 00:18:10.240
Um, and you know, um as far as joy is concerned, you know, Mike has always been a joy to have around.
00:18:10.480 --> 00:18:20.880
It is really more of a thing of hey, like we can now see more joy in in him because we know each day better and better how to take care of him.
00:18:21.119 --> 00:18:21.680
Absolutely.
00:18:21.839 --> 00:18:23.440
That definitely makes sense.
00:18:23.680 --> 00:18:29.920
Nutrition plays such a strong and certain role in managing IVA and other metabolic conditions.
00:18:30.079 --> 00:18:35.119
How did you come to understand its importance and what difference it has made for Micah?
00:18:35.759 --> 00:18:37.680
Yeah, I mean, that was very early on.
00:18:37.839 --> 00:18:41.440
So, you know, Micah was on a TPN bag to start with.
00:18:41.519 --> 00:18:47.440
And for those of you who are on here and have to deal with that on a daily basis, my thoughts and prayers go out to you.
00:18:47.519 --> 00:18:53.119
I mean, that that is, you know, we were told early on, hey, maybe this is is life for him.
00:18:53.200 --> 00:19:07.519
And and for those of you who know, um, you know, for those kids who have to have essentially that liquid bag of of nutrients, um, it it is a it's a kidney killer, it's a liver killer, like it, it's it's really rough to deal with, right?
00:19:07.759 --> 00:19:12.160
And is that the feeding tube that you were speaking about previously, or is that something different?
00:19:12.480 --> 00:19:17.839
So, no, this would be an intravenous way of of um of feeding, yeah.
00:19:18.000 --> 00:19:21.039
And so that one is really, really, really hard on the body.
00:19:21.119 --> 00:19:27.519
Micah had that for a little bit, like for maybe about 10, 15 days when he was in the hospital.
00:19:27.599 --> 00:19:31.119
Um, but there's some kids who that's the only way they can get nutrition.
00:19:31.440 --> 00:19:31.920
Got it.
00:19:32.079 --> 00:19:41.359
Um and so, you know, we we found out real early, like, hey, like, first of all, um things things you don't know, right?
00:19:41.519 --> 00:19:46.960
There's these companies that make special formula for people who have these metabolic disorders.
00:19:47.039 --> 00:19:49.359
Yeah you know, who who knew, right?
00:19:49.680 --> 00:19:56.000
Um, and and so we found out real quick that nutrition uh is foundational for Micah.
00:19:56.079 --> 00:19:59.359
Yeah, not just his formula, but nutrition across the board.
00:19:59.519 --> 00:20:06.960
Um, and it's not just about preventing a crisis from happening, it affects his energy, it affects his focus, it affects his emotional regulation.
00:20:07.200 --> 00:20:10.480
Uh, and it also, I mean, it even affects his physical comfort.
00:20:10.640 --> 00:20:10.880
Yeah.
00:20:11.119 --> 00:20:27.440
Um and so because Micah has traumatic brain injury, which shows itself in autism, ADHD, high anxiety, and other ways, um, anything that disrupts his uh physical system really quickly ripples outward.
00:20:27.599 --> 00:20:34.240
And so when nutrition isn't right, we see it, but when nutrition is right, everything works better.
00:20:34.400 --> 00:20:41.680
Um, and so we we learned really early also um, you know, that not all formulas are created equal.
00:20:41.759 --> 00:20:42.079
Yeah.
00:20:42.240 --> 00:20:48.799
Um, and and that quality really matters, not just for metabolic control, but also for whole body health.
00:20:49.119 --> 00:20:49.839
Absolutely.
00:20:50.079 --> 00:21:01.440
Metabolically speaking, this podcast is only possible because of the amazing work that Cambrook does, and we know it's had a positive impact on so many families from their foods to formulas and more.
00:21:01.680 --> 00:21:14.799
Can you share how the formula um Mica's on, Cambrook's formula, has helped him and his day-to-day life with the difference having the right type of nutrition that he obtains now?
00:21:15.599 --> 00:21:16.319
Oh man.
00:21:16.400 --> 00:21:20.559
Uh I first of all, I I can't say enough good things about Cambrook.
00:21:20.720 --> 00:21:37.279
I mean, I'm really honored um to be here with you, Meredith, and to to be able, you know, uh I talked to the to the Cambrook team, to Susie and the team about being on the podcast and just super honored about being on here to to talk about um how they've supported Micah.
00:21:37.440 --> 00:21:41.519
Um, you know, we we we switched Micah to Cambrook Isovacton.
00:21:41.759 --> 00:21:46.319
Uh he was around, I think he was around six, somewhere around in there.
00:21:47.119 --> 00:21:53.759
Um and um, you know, we saw changes pretty much immediately.
00:21:54.000 --> 00:22:09.359
Um issues that had been persistent for him, um, from halitosis to runny stool, stomach aches, other GI related problems, um those all resolved once he was on isobactin.
00:22:09.440 --> 00:22:21.119
And again, um yeah, it you know it's it's one of those things that, you know, it's uh not the same for everybody, but but for for him, um, it was a marked difference.
00:22:22.240 --> 00:22:33.440
Um and you know, I I know you mered this as well as a as you know someone we talked about the again talk about this pre-show like as someone who who's you know uses Cambert products as well.
00:22:33.519 --> 00:22:33.920
Yes.
00:22:34.079 --> 00:22:46.559
Um I think you would agree like there is a there there there is a quality difference there um that is is really different even even from from a perspective of taste and smell and those kind of things too.
00:22:46.799 --> 00:23:22.559
Absolutely definitely for in the food and formula bulk that's right that's right that's right so you know what that you know essentially what that told us as as you know we saw Micah make that transition is it wasn't just about meeting minimum nutrition requirements right yeah uh Cambrook has a focus on quality and and tolerability right that made a real difference for Micah and his comfort and his overall health um which you know he he's got enough to deal with right if we can make one if we can make a small thing easier and and drinking formula multiple times a day isn't a small thing.
00:23:22.640 --> 00:23:40.079
Yes um so you know I I I I just want to shout out Cambrook care you know can't can't say enough about the Cambrook care folks um you know from from Kelly and the team in AR to Barb and the and the team over that that you know that call me and say hey we got to get his stuff ready to ship out.
00:23:40.240 --> 00:24:10.480
Yeah just everybody's just fantastic and and you know they've really helped us navigate everything from insurance coverage and access which I could do a whole podcast on um to you know uh to to just making sure that that that Micah is is well taken care of yeah and I've never talked to any of them where they haven't said hey how is Micah how's he doing how how are things is there anything we can do for you and and that means a huge deal to parents absolutely you kind of beat me to the next question but this is great.
00:24:10.640 --> 00:26:06.880
How did Canbra Care help you navigate access and coverage for Micah's products whether that's his suit and or his formula and how did that affect you and your family yeah so um you know essentially Canberra Care um they they essentially help to take the um the the hard stuff out of trying to navigate all of this um for for those of you listening who either yourself Meredith like yourself or who have a child with uh metabolic disorders and have to go through the the formula race uh every time I say the word insurance you're going to cringe and you're gonna kind of maybe uh feel a little sick to your stomach uh and that's all of us you're not alone um that this stuff is very difficult to navigate and and Canberra care has been great and hey they're proactive um they they make sure that all the documentation is in place they reach out to your physicians um they they work with the insurance companies um you know so so uh I I I think the one thing I would just say is if you have trouble with any of those things and you're utilizing a Cambrook product reach out to the care team because uh it the the name is not made up they really do care uh and and they they have taken very good care of us uh and taken good care of Micah and made sure that even in times where I've called and and and and probably the Cambrook folks are listening are gonna kind of chuckle at me I've called and I've said hey I messed up and forgot to call in an order and uh we you know this was before we started doing auto renewals of something about our insurance and I'm I'm down to like the last five of these these these packets of formula and you know and they're like hey Justin you're good like we're gonna overnight you some of it and then we'll get you I mean that's huge.
00:26:07.119 --> 00:26:07.680
That's huge.
00:26:07.759 --> 00:26:17.599
And and and uh and they've done that for us and they've kept him uh that they've kept him alive that Micah is alive and and not only alive but thriving because of Canberra care.
00:26:17.920 --> 00:26:19.119
That's amazing.
00:26:19.440 --> 00:26:26.640
This podcast is all about community and celebrating the support available to individuals and families living with metabolic conditions.
00:26:26.799 --> 00:26:30.240
And what you're explaining is truly proof of that.
00:26:30.480 --> 00:26:38.000
We know that people, resources, and organizations play a large role in making this journey feel less lonely and daunting.
00:26:38.240 --> 00:26:47.359
What resources and organizations have been most important to you on this journey with Micah having IVA and why yeah great question.
00:26:47.920 --> 00:26:49.119
It is all about community.
00:26:49.200 --> 00:27:03.599
I I tell people all the time it's all about people right it's a it's about finding the right person and Meredith I could probably ask you hey tell me about some people in your life who have made a difference in your metabolic journey.
00:27:03.680 --> 00:27:05.680
Yep and you could probably start listing names.
00:27:05.839 --> 00:27:27.039
Yep absolutely yeah for sure I think everyone that is listening and lives with a metabolic condition could do that as well as the parents because the parents like we're talking about you have a journey of IVA but that journey yes it's just like Micah's but also it's different than Micah's.
00:27:27.279 --> 00:27:35.680
You guys are living with IBA in different ways just like I'm living with PKU in different ways versus my family and everyone else that's listening.
00:27:35.839 --> 00:27:46.160
So I think it's very um exciting that we all have our people in our corner and our people in our community that we can list off like you're explaining.
00:27:46.799 --> 00:27:49.519
Agree 100% so community is key.
00:27:49.599 --> 00:30:05.359
Yeah right community is essential and so um you know some some organizations that that that we're you know that we follow closely and are a part of um the organic acidemia association um so many of you probably have heard of Kathy and the crew over there um fantastic right so um you know back when mica was first born um there really wasn't a whole lot on the internet about it wasn't the same internet as today right um I couldn't just go out and ask chat gpt about it so um you know there there uh there was uh um you know Facebook and so we went out to Facebook and we started looking around and we tried to search and find out and we and we came across organic acidemia association and I think I think there were some folks um shout outs of the great folks at Cincinnati Children's um I think there were some folks there that pointed us in the right direction and and so we started following them and some of the posts that they put out and and we soon became part of a group and there were other people in the group who um you know had similar struggles as us and so over uh over time we've been able Mike has had some articles in the OAA newsletter and and we kept really close uh ties with with Kathy and the group over there and and and just just a great if you haven't checked them out uh for all those of you with organic acidemias um please do so um Nord is another one right um that's the that's the the national organization on um rare disorders rare disorders yeah yeah rare diseases or rare disorders um if if you're in the advocacy right um which I think all of us probably are in some way or another uh if we take care of ourselves or our kiddos um sign up for their newsletters they'll keep you abreast on hey here is things going on in the nation and in your state um having to do with uh rare disease rare disorders and uh actual uh legislation and law uh that you can write your senators and your congress uh folks about um and say hey like I live this right and and I've had I've had the opportunity to have sit-down conversations with with senators and congresspeople about these things because uh of information I've received from Nord.
00:30:05.519 --> 00:30:06.880
So huge stuff there.
00:30:07.119 --> 00:30:11.920
Um the newborn screening system that that community has been essential.
00:30:12.240 --> 00:30:30.480
We got folks like Janemonico uh and and others who are driving that across the nation to say hey it's important for these kids to have newborn screening done early and for all of the organic acidemias to be put into play and so um and and lastly we've already talked about them but Canberra Care.
00:30:30.559 --> 00:30:34.240
Canberra care is is you know been big community for us.
00:30:34.319 --> 00:30:39.759
And so these groups have not only provided information to us but even more so connection.
00:30:39.920 --> 00:30:45.200
Absolutely they help remind us that we're not alone right and and that's a that's a big deal.
00:30:45.440 --> 00:31:00.400
Yes and I can't wait to hopefully meet you guys someday at one of these community meetings whether that's newborn screening related Nord related maybe a flock camp someday I'd love to see you guys and be in person.
00:31:01.440 --> 00:31:31.119
As a parent and an advocate what are your hopes for Micah's future and for the wider metabolic community in terms of awareness support and opportunity every time somebody asks me this I I start off with my canned phrase um my canned phrase is we want Micah to be the best citizen that he can be that that's that's my canned phrase that I tell everyone I think I may have even told you that in the pre-show is that we just want Micah to be the best citizen he can be.
00:31:39.839 --> 00:31:42.160
And and look at what you're doing right it's great.
00:31:42.400 --> 00:32:32.720
And so you know we we want stability for him uh dignity uh quality of life um and we want you know for him to have the supports that he needs that recognize both his medical and his intellectual needs um and you know it also makes me think about the broader metabolic community right I I I really do hope for increased awareness um for better access to high quality nutrition um you know I I hate to see the letters that come out from Cambrook where they say hey you know we're having a hard time getting products for this and this getting we're trying a hard time getting g getting the the pieces of the puzzle we need to make these products because of the current environment right um that that's sad right that's there's somebody out there who's not getting what they need because of that.
00:32:32.799 --> 00:32:40.960
And so um you know systems that understand rare conditions and that those rare conditions don't neatly fit into standard boxes.
00:32:41.359 --> 00:32:48.720
Absolutely you know and really at the end of the day uh families shouldn't have to fight so hard to get what the children need.
00:32:48.880 --> 00:33:01.599
Um and that's my hope is that you know we can continue to work on that uh so that we can get what our kiddos need uh regardless of whether or not they have a rare disease uh without having to put so much time into fighting for it.
00:33:01.839 --> 00:34:52.400
Absolutely and you mentioning the parents for parents listening who maybe at the very beginning of their journey like you were with Micah feeling worried overwhelmed unsure and many other feelings what is a message that you'd want them to take away from this episode today yeah this is hard um but you know if you're at the beginning of this journey the the most important thing I want you to hear today is this um you're not felon and also you're not alone so you know right now everything probably feels overwhelming um too much information like I said those people brought that big pack of stack of papers to us and said here you go too much information too many decisions um you know Meredith on on day five I I the doctors walked up to us and they had all you know all these big words and things and I said hey I said I I don't know any of what you're talking about I said only I only have one question for you when do I need this when when do I need to start thinking about a funeral for our son that was my question for them on day five and some of you have probably asked that same question uh too many decisions too much uncertainty and guess what that's normal that's normal in these situations it doesn't feel normal to start with but it's normal so you don't have to have everything figured out today you also don't need to know what the next 10 years looks like because I don't even know that for Micah right I try to look ahead but I don't know all you need to do is take the next right step for your kiddo for your family member for whoever it is you're taking care of and then take the next right one after that and and what's gonna happen is that's gonna form routines and support's gonna grow and confidence is going to come um but you're not failing.
00:34:53.920 --> 00:35:04.800
Just remember that you know if if you don't get anything out of any of this your your child or your loved one whoever it is you're helping take care of they're they're much more than a diagnosis.
00:35:05.199 --> 00:35:15.599
Absolutely I I don't I don't tell people you know Micah Hensley comma IVA like it's not it's not a degree hold it's not it it it doesn't define him.
00:35:16.159 --> 00:36:14.800
And so your your your kid is more than the diagnosis and also you are too you're more than that diagnosis as a parent um as a caregiver and um it it you know it definitely will change the way that you function but it does not have to define you uh and and um and and you can move forward well that's incredible the words you've said and you said the statement that made me cry last time the funeral statement but it's true it's the real life situation that you guys were in and now Micah is thriving today and doing wonderful and beautiful and I hope I'm able to meet him someday would love that but going from there we just want to thank you thank you so much for joining us today Justin Cambrick thanks you I thank you we're very appreciative and for sharing both your story and Micah's journey through living with IVA.
00:36:15.039 --> 00:36:22.239
It's been inspiring to hear about how the early challenges your family has faced and what daily life sounds like it is now.
00:36:22.400 --> 00:36:30.159
The moments that are highlighted from how well Micah is thriving to also hearing about the difficulties that you guys have faced as a family.
00:36:30.400 --> 00:36:48.239
We've loved hearing your insights on the role of nutrition, how you have been supported and how you're supporting the community with the care team here at Cambrook and the organizations as well how community can make such a difference in your families and other families with metabolic conditions' lives.
00:36:48.480 --> 00:36:56.639
Your story is powerful reminding of resilience connection and hope that families can navigate life with a rare metabolic condition.
00:36:58.960 --> 00:39:11.599
Now it's time for a fun part our community conversations in this segment we'll ask you questions that were submitted giving a chance for us to explore um some of the guests stories from new and personal perspectives today we have a few questions from you actually from the Cambrook team some people you know Bridget and Susie so Bridget has a question she said how do you as a parent approach advocating for your son from school to his daily needs it's it's uh it it takes a village um so um you know I I've I've been blessed with you know kind of the um I guess a uh a a trait of being able to just be rather blunt and and sometimes that's what's needed in some cases um also my my wife is really good at kind of uh helping uh soften the that sometimes if needed but yeah soften the blow a little bit um I I think I think the biggest thing I would say is just don't be afraid to advocate right I I I can't tell you the number of people that I that I work with and and and I also have the opportunity I'm I'm I'm a trained IEP advocate um and so I get the opportunity to help people with IEP advocacy as well to analyze uh the individualized education plans um I have spoken before school boards I've spoken before um state school uh state education boards about this um and I I think it really is a thing of hey if if you have that trait to be able to advocate then go do it if if you don't have that trait to be super blunt and forward and and advocate like that go find somebody that can right and and and and and help help them help you um because the the worst thing that you can do is not advocate at all because that doesn't help you it doesn't help your kid and the number one thing I've learned is that if one of my kids needs advocacy for something there's a really good chance that somebody else's kid does too.
00:39:11.760 --> 00:39:15.519
Yep absolutely that is definitely true.
00:39:15.840 --> 00:40:59.920
For the next question Susie who you know from the Cambrook team asked what's your favorite memory with Micah that reminds you how far you guys have come well good question Susie and thank you susie for all you do uh shout out from the Hensley family um so you know I it's a very recent memory um it it actually happened this week um you know so you know we we remember and I told you on this podcast right I mean you know I've got pictures of of Micah laying lifeless on a on a table you know and I mean you know we we those pictures remain in our minds yeah um and when you when you see those pictures when you think about when you take them you know you you you don't know again what's coming next what comes in a month what comes in a year what comes in five or ten years you know and um you know mica has has had his share of of struggles he continues to um but you know uh this week he he goes uh at school this week at school he he he got up in front of the whole assembly and he read a poem he read a poem about about mark uh for about martin luther king uh uh about dr king for for for his for dr king's birthday and and you know to and and you know I don't I don't want to sugarcoat anything like you know he he had help reading it like Micah doesn't read like he had help reading it and um you know he was there with a lot of other peers that also have intellectual disabilities um and so you know it I'm not saying he got up in front of a you know in front of a huge crowd of people and and you know read flawlessly but but Micah did something that I didn't think Micah would ever do.
00:41:00.079 --> 00:41:59.840
You know he he he stood up in front of a group of people and was was able to to to recite a small short poem to them with help and just to see all the other kids in the room some of them who can't stand up some of them who can't um feed themselves some of them who who um you know who have all kinds of myriad of disabilities and any of those things could have been him and we're talking about a difference of five fifteen twenty minutes an hour when he was a little baby any of those could things could have been him and so just to see how far he come he's come you know to be able to do those kind of things um and to tie this back around since it's Susie's question is because of people like Susie who have who have made sure that that that mica has had the formula he needs to help him grow physically and mentally and and emotionally and and that has that's what has brought us here.
00:41:59.920 --> 00:42:08.719
And and so um you know that that is that's what I get to see even on a weekly basis he he just you know surprises us with things he can do.
00:42:08.960 --> 00:42:16.719
That's beautiful and I think it's funny how we were going to record this episode previously I believe to that happening.
00:42:16.960 --> 00:42:22.320
So I think recording today was meant to be so you'd have this story.
00:42:23.199 --> 00:43:16.400
It's exactly right I I thought about that the other day when I was watching him uh and you know we kind of had our pre-show over the weekend and um uh yeah it was it was amazing to get to watch him do that and and I know that I know that that my answer probably mimics it Meredith if we were to talk to your your family they would mimic similar things hey we didn't think Meredith would would would be able to do these things yeah right and and there's so many people that are listening and and they see their loved ones and they're like hey whether it's something really big like hey my daughter does a podcast now or whether it's something really small like hey um you know my my loved one was supposed to pass away when they were very young and now they're they're 10 or 15 or 20 there there's all kinds of different stories like that across across our ecosystem that are just amazing.
00:43:16.719 --> 00:43:34.960
Absolutely well thank you Justin for answering the community conversation questions today that is all for the community conversations if you'd like to include a question in the future episodes keep an eye out on social media for our posts and I'll regularly ask the community for their input.
00:43:35.360 --> 00:43:56.880
As we wrap up today's show remember that you can find helpful resources as well as more information from Justin in the show notes below thank you for listening and we'll see you next time that is it for today's episode of Metabolically speaking rare conditions, real stories and a reminder that life with a metabolic condition is about living, not limits.
00:43:57.519 --> 00:44:01.840
If today's episode resonated with you share it with someone who might need to hear it.
00:44:02.079 --> 00:44:04.239
And if you have a moment leave us a review.
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It helps others find their way here too we'd love to hear from you.
00:44:09.119 --> 00:44:25.199
If you have feedback a story to share or a question send us an email you'll find the email address in the show notes below make sure to subscribe to Metabolically speaking on your favorite podcast platform and tune in each month to join your tribe breaking barriers and living without limits.
00:44:25.440 --> 00:44:28.079
Thanks for being here and we'll see you next time
