speaker-0: If they were talking about her, they were talking to her, I'm blind, not stupid, ask me. We thought you were awful. And I said, Well, if she hadn't got any sight left at all, what's she going to do? We just made her be as independent as she could. She was a little fighter when we finally got the proper diagnosis. It was only a month before she died. So that was kind of where we went to with the blind part of it, and the school was for for visually impaired kids. So we got there and they just said, three and a half, we'll accept her in nursery. And she went for a day or something, and they just went, No, we'll just put her into the main part of the school where the five-year-olds go. So academically, she was really good. You know, she was reading and doing all those other things before she lost her sight. She was she was a pretty smart kid. but that school were just Fabulous. You know, that was that was the start of everything kind of coming together. So she didn't go full time because she couldn't cope with that. So she went for two or three half days a week to start with, and then we were looking at building it up.
speaker-1: And so obviously it sounds like you have lots of changes in the diagnosis. So as a journey it wasn't a sort of this is where we're at now, you've got this down and then there's a flat line. It's very wavy. So how do I know you sort of had this very strong family unit at home, and the determination. So but how did That still helped you cope with that emotional roller coaster of, we haven't got it right. We're down and we're up again and we're down again. Well was it something else that you had that you had to keep yourself from?
speaker-0: Yeah, yeah, I think I think the the main part of all of it was that you just kept thinking, well, at least we've we've got something now and things can't get any worse and every time you went to see somebody they got worse. So when we did finally get the official diagnosis, I suppose I jumped a bit out of time with the with the other child with it. When we finally got the proper diagnosis, it was only a month before she died. And what this this endocrinologist had said to us was that she had the heart murmur that was associated with this condition because I didn't know you had specific heart murmurs for specific conditions. And he just thought that two years maybe and then she'd start needing medication, which would just keep her going. It wouldn't ever cure her because there was there is there's no cure and there's nothing that they could have done. And none of these children had lived past 13. So we knew, and before he told us that, we knew she hadn't got a a full lifespan because that was quite obvious with her size and everything. She never grew past the size of a eighteen month old, really. so yeah, it was a month before she died we got that. So we were expecting at least two years of of medication. And that didn't happen, I'm afraid. So yeah, but you just kept thinking nothing worse can happen. And it it just carried on happening, which is which is soul destroying really. But you just pick yourself up and you dust yourself down and you just keep fighting really.
speaker-1: suppose that is a beacon of you come across as a a beacon of hope for parents who were struggling not just with Carly's condition but there's so many conditions now because of the modernisation and of medicine picking up on on things that were just dismissed as just lumped together, for example, with other stuff and and obviously now it's separated. It's a struggle. So I I think despite the trauma That you obviously suffered because it would have been traumatic to obviously have those ups and downs and those constants, despite the love of you had for Carly and the joy that Carly wrong to your life, your family, etc. so I suspect having Dr. Quarrell ra around for most of the time. It made a big difference. What did he do that you sort of saw in him something different that others just weren't doing at all at the time?
speaker-0: He believed in us. Right. And I think I think that that's just the biggest thing that you've got somebody who actually believes in you and just doesn't dismiss you. Because as as I say at the time, there were 22 recorded cases in the world. And it obviously it was a form of dwarfism. But we we got involved with the Restricted Growth Association at one point and we were invited over to this gathering in Birm near Birmingham. So off we went, and the room was full of there were 30 odd people there, all of whom had a a a growth restriction. And that was actually really quite difficult because I'd never met anybody who had any form of dwarfism before. So you kind of you don't really know what to expect. But there was a young man there who he was with his girlfriend or wife, I can't remember which, and he came up to me and he said, What's Carly's condition then? Because she's not one of us. So even amongst the different growth conditions, there's all sorts of differences, which we obviously weren't aware of. So it's getting those people like Dr. Quarrell on board who sits and takes time and explains things to you and lets you ask the questions that you need to ask. So he was he was just our saviour, I think, really.
speaker-1: And how just on that point that you attended because sometimes the you know when you attend and like I'll just say example I when I had had my prostate removed and the cancer and then I ventured out and to join a local support group, sort of and it wasn't very welcoming, let me tell you. No because I was so young, I was forty-one, and I'd had the removal of the prostates, there was a lot of kickback. By sort of the older gentleman and they sort of said, well, you're not one of us. And and just because of the similarities to what you just said, was that that moment sort of a positive or a negative for you and and what you were going through? Having that person say that wouldn't be malicious at all, I wouldn't thought. But
speaker-0: No, they they were really, really helpful and friendly. And we stayed, well, I stayed in contact with them for quite a while. But then there was the other aspect of it where I can't remember what the name of the group was now, but it was to do with rare conditions in children. And I rang them up to see if they'd got any, because of course there's there's very little internet back then. So I rang them up to see if they'd got any information on on these sorts of things. And she asked the normal questions, and the first thing she said was. Is your husband the child's father? And I said, yes. And she said, Are you sure? And you just think you're just trying to do the best. And even just no, you know, if she's my child, it shouldn't matter, should it? but to be asking questions like that in that kind of manner was was quite, quite bad.
speaker-1: And your emotions would have been fraught with the roller coaster that you were still on. And it's difficult, isn't it, to sort of like I was I I just was flummoxed by the creetings I got by certain and or somebody to say I never went back. I left that and never went back to that group. I think it's difficult, isn't it? Because I think when you're in a situation with a health of yourself or a loved one and you come across problems where it's It's it's almost like people are fighting against you. It can it can drain you are already a drained person even more to the point it it tests your will, doesn't it?
speaker-0: Yeah, I I think I think the other thing that people don't really take account of, if you have a child that looks different in any in any way, it's always the reaction of other people as well. And whilst she was very intelligent, so as soon as people started speaking to her, because she wouldn't stand any nonsense about them talking to me if they were talking about her, they were talking to her. And she used to say to people, I'm blind, not stupid, ask me. so she was she was Pretty spot on, but I remember bumping into somebody that I used to work with when before things got really, really bad. And she said, How are you doing at home, you know, looking after your daughter? And I went, It's really hard work. And she said, All children are hard work. And that I think was probably the only time I really lost it with anybody because I said to her, Well, you know, you think next time it's a nice day, you can put your kids in the garden and they can go out and play. I can't do that. Next time it's raining and you're you want to do something in the house, you can stick yours in front of the television and you've got an hour to yourself. I can't do that. It was it was constant. It was constant because she needed attention all the time. Yes. but yeah, if you I just don't think that people take on board other people's reactions to having a child who's different for want of a better word.
speaker-1: No, and you know, it's we we're expected, aren't we, societal wise, to just crack on with everything can never moan about anything. But I I don't think that's true. speaking to a few professionals in my life. Sometimes it's good to just have a little bit of a release in a way, because if you suppress emotions that are natural to a person that's gone through what you were going through with Carly, then It's gonna cause you a heap of problems as well, because it can then cause you on physical and and psychological. So some t to go through what you went through and and never if you'd have said I never lost my temper with anybody I would be worried that you are s suppressing some other things, but Well I think it's right to do what you did.
speaker-0: I think Yeah, it's also about being being yourself. I think you have to be yourself because we had no idea that her site was so bad. We had no idea. And it was only when she'd been to nursery one day because we paid for her to go into nursery because the local school wouldn't accept her and all of that. So they said she keeps falling over things and we said, well, she's fine at home. So we got a a physiotherapist involved and she came out and then we realized that her sight was getting really quite bad. But she compensated because we we are tidy people and we always were. But she used to use her doll's pushchair everywhere she went. So she used it as like a white cane. so she got herself around without falling over and banging into things, and she was only three and a half at the time when she did that. But We went to this specialist in, I think that was Birmingham, and he just said, You're off to Queen's Medical tomorrow. So they sent her down to Queen's Medical Centre with us, obviously. And there was a surgeon there who he knew he would never see a kid like this again. So he wanted to do this really revolutionary operation on her eyes, which he said She might get some back, but there was a good chance that she'd go blind anyway, but he would never get that chance again. And we said, no, we didn't want that. But they did the operation that was kind of planned and relevant. So when we went back on the ward and she'd come round and it was the day after, and it was meal time, and I served her a food and she had a bowl with sides on and her own spoon. And I I just said, There's your dinner. And she started eating it because I made her eat it herself. And one of the other mothers came up to me afterwards and she said, you know, we thought you were awful. And I said, Well, if she hadn't got any sight left at all, what's she going to do? So I kind of my attitude from the beginning was that had she had a full life expectancy, that child would have been as independent as she could possibly have been. And where do you stop? Where do you stop spoon feeding? you know, literally and metaphorically. Because there was a a child at a child at her school who used to board there and she went home every Friday and by Monday they'd got to start again with her because that's what the parents did. They sat her in the corner and they just did everything for her. But that's you're not going to ever be able to live independently.
speaker-1: No, and people will maybe even now viewers may say the same thing as some of those parents said in that war. But I am a great I'm behind you. If Carly had a had a full life expectancy but with those disabilities, yeah. Then at some point she would have had to have been able to cope with certain certain things that we've all got to deal with, like feeding, like cleaning, like cook housework or some something along those lines. Yeah. With help obviously. But you can't there's a comes to a point where you have to go, No, we have to sort of prepare for you would never have known what was going to happen obviously in future, but prepare for this this child of ours to go into a big wide world as a potentially as an adult. And we can't just do you know, you've got to do the right thing by her rather than what other people around you are saying.
speaker-0: Yeah, in a in a morning, what I used to do was put her clothes out in a little pile in front of her, in the order that she needed to put them on. And she could do 80% of that, maybe. So I helped with the stuff that she couldn't physically do. and we made adaptations as best we could. Because the physio that we got, she was Philly Charles. She was another one who was just superb and she helped us with all sorts of things. And we we carried that on through the short time that we had her, you know. We just made her be as independent as she could. And she was feisty. She would tell you if she wasn't happy, you know. so yeah, she she was a little fighter. She was a little fighter and she did the best for herself as well.
speaker-1: And so obviously it sounds like you have lots of changes in the diagnosis. So as a journey it wasn't a sort of this is where we're at now, you've got this down and then there's a flat line. It's very wavy. So how do I know you sort of had this very strong family unit at home, and the determination. So but how did That still helped you cope with that emotional roller coaster of, we haven't got it right. We're down and we're up again and we're down again. Well was it something else that you had that you had to keep yourself from?
speaker-0: Yeah, yeah, I think I think the the main part of all of it was that you just kept thinking, well, at least we've we've got something now and things can't get any worse and every time you went to see somebody they got worse. So when we did finally get the official diagnosis, I suppose I jumped a bit out of time with the with the other child with it. When we finally got the proper diagnosis, it was only a month before she died. And what this this endocrinologist had said to us was that she had the heart murmur that was associated with this condition because I didn't know you had specific heart murmurs for specific conditions. And he just thought that two years maybe and then she'd start needing medication, which would just keep her going. It wouldn't ever cure her because there was there is there's no cure and there's nothing that they could have done. And none of these children had lived past 13. So we knew, and before he told us that, we knew she hadn't got a a full lifespan because that was quite obvious with her size and everything. She never grew past the size of a eighteen month old, really. so yeah, it was a month before she died we got that. So we were expecting at least two years of of medication. And that didn't happen, I'm afraid. So yeah, but you just kept thinking nothing worse can happen. And it it just carried on happening, which is which is soul destroying really. But you just pick yourself up and you dust yourself down and you just keep fighting really.
speaker-1: suppose that is a beacon of you come across as a a beacon of hope for parents who were struggling not just with Carly's condition but there's so many conditions now because of the modernisation and of medicine picking up on on things that were just dismissed as just lumped together, for example, with other stuff and and obviously now it's separated. It's a struggle. So I I think despite the trauma That you obviously suffered because it would have been traumatic to obviously have those ups and downs and those constants, despite the love of you had for Carly and the joy that Carly wrong to your life, your family, etc. so I suspect having Dr. Quarrell ra around for most of the time. It made a big difference. What did he do that you sort of saw in him something different that others just weren't doing at all at the time?
speaker-0: He believed in us. Right. And I think I think that that's just the biggest thing that you've got somebody who actually believes in you and just doesn't dismiss you. Because as as I say at the time, there were 22 recorded cases in the world. And it obviously it was a form of dwarfism. But we we got involved with the Restricted Growth Association at one point and we were invited over to this gathering in Birm near Birmingham. So off we went, and the room was full of there were 30 odd people there, all of whom had a a a growth restriction. And that was actually really quite difficult because I'd never met anybody who had any form of dwarfism before. So you kind of you don't really know what to expect. But there was a young man there who he was with his girlfriend or wife, I can't remember which, and he came up to me and he said, What's Carly's condition then? Because she's not one of us. So even amongst the different growth conditions, there's all sorts of differences, which we obviously weren't aware of. So it's getting those people like Dr. Quarrell on board who sits and takes time and explains things to you and lets you ask the questions that you need to ask. So he was he was just our saviour, I think, really.
speaker-1: And how just on that point that you attended because sometimes the you know when you attend and like I'll just say example I when I had had my prostate removed and the cancer and then I ventured out and to join a local support group, sort of and it wasn't very welcoming, let me tell you. No because I was so young, I was forty-one, and I'd had the removal of the prostates, there was a lot of kickback. By sort of the older gentleman and they sort of said, well, you're not one of us. And and just because of the similarities to what you just said, was that that moment sort of a positive or a negative for you and and what you were going through? Having that person say that wouldn't be malicious at all, I wouldn't thought. But
speaker-0: No, they they were really, really helpful and friendly. And we stayed, well, I stayed in contact with them for quite a while. But then there was the other aspect of it where I can't remember what the name of the group was now, but it was to do with rare conditions in children. And I rang them up to see if they'd got any, because of course there's there's very little internet back then. So I rang them up to see if they'd got any information on on these sorts of things. And she asked the normal questions, and the first thing she said was. Is your husband the child's father? And I said, yes. And she said, Are you sure? And you just think you're just trying to do the best. And even just no, you know, if she's my child, it shouldn't matter, should it? but to be asking questions like that in that kind of manner was was quite, quite bad.
speaker-1: And your emotions would have been fraught with the roller coaster that you were still on. And it's difficult, isn't it, to sort of like I was I I just was flummoxed by the creetings I got by certain and or somebody to say I never went back. I left that and never went back to that group. I think it's difficult, isn't it? Because I think when you're in a situation with a health of yourself or a loved one and you come across problems where it's It's it's almost like people are fighting against you. It can it can drain you are already a drained person even more to the point it it tests your will, doesn't it?
speaker-0: Yeah, I I think I think the other thing that people don't really take account of, if you have a child that looks different in any in any way, it's always the reaction of other people as well. And whilst she was very intelligent, so as soon as people started speaking to her, because she wouldn't stand any nonsense about them talking to me if they were talking about her, they were talking to her. And she used to say to people, I'm blind, not stupid, ask me. so she was she was Pretty spot on, but I remember bumping into somebody that I used to work with when before things got really, really bad. And she said, How are you doing at home, you know, looking after your daughter? And I went, It's really hard work. And she said, All children are hard work. And that I think was probably the only time I really lost it with anybody because I said to her, Well, you know, you think next time it's a nice day, you can put your kids in the garden and they can go out and play. I can't do that. Next time it's raining and you're you want to do something in the house, you can stick yours in front of the television and you've got an hour to yourself. I can't do that. It was it was constant. It was constant because she needed attention all the time. Yes. but yeah, if you I just don't think that people take on board other people's reactions to having a child who's different for want of a better word.
speaker-1: No, and you know, it's we we're expected, aren't we, societal wise, to just crack on with everything can never moan about anything. But I I don't think that's true. speaking to a few professionals in my life. Sometimes it's good to just have a little bit of a release in a way, because if you suppress emotions that are natural to a person that's gone through what you were going through with Carly, then It's gonna cause you a heap of problems as well, because it can then cause you on physical and and psychological. So some t to go through what you went through and and never if you'd have said I never lost my temper with anybody I would be worried that you are s suppressing some other things, but Well I think it's right to do what you did.
speaker-0: I think Yeah, it's also about being being yourself. I think you have to be yourself because we had no idea that her site was so bad. We had no idea. And it was only when she'd been to nursery one day because we paid for her to go into nursery because the local school wouldn't accept her and all of that. So they said she keeps falling over things and we said, well, she's fine at home. So we got a a physiotherapist involved and she came out and then we realized that her sight was getting really quite bad. But she compensated because we we are tidy people and we always were. But she used to use her doll's pushchair everywhere she went. So she used it as like a white cane. so she got herself around without falling over and banging into things, and she was only three and a half at the time when she did that. But We went to this specialist in, I think that was Birmingham, and he just said, You're off to Queen's Medical tomorrow. So they sent her down to Queen's Medical Centre with us, obviously. And there was a surgeon there who he knew he would never see a kid like this again. So he wanted to do this really revolutionary operation on her eyes, which he said She might get some back, but there was a good chance that she'd go blind anyway, but he would never get that chance again. And we said, no, we didn't want that. But they did the operation that was kind of planned and relevant. So when we went back on the ward and she'd come round and it was the day after, and it was meal time, and I served her a food and she had a bowl with sides on and her own spoon. And I I just said, There's your dinner. And she started eating it because I made her eat it herself. And one of the other mothers came up to me afterwards and she said, you know, we thought you were awful. And I said, Well, if she hadn't got any sight left at all, what's she going to do? So I kind of my attitude from the beginning was that had she had a full life expectancy, that child would have been as independent as she could possibly have been. And where do you stop? Where do you stop spoon feeding? you know, literally and metaphorically. Because there was a a child at a child at her school who used to board there and she went home every Friday and by Monday they'd got to start again with her because that's what the parents did. They sat her in the corner and they just did everything for her. But that's you're not going to ever be able to live independently.
speaker-1: No, and people will maybe even now viewers may say the same thing as some of those parents said in that war. But I am a great I'm behind you. If Carly had a had a full life expectancy but with those disabilities, yeah. Then at some point she would have had to have been able to cope with certain certain things that we've all got to deal with, like feeding, like cleaning, like cook housework or some something along those lines. Yeah. With help obviously. But you can't there's a comes to a point where you have to go, No, we have to sort of prepare for you would never have known what was going to happen obviously in future, but prepare for this this child of ours to go into a big wide world as a potentially as an adult. And we can't just do you know, you've got to do the right thing by her rather than what other people around you are saying.
speaker-0: Yeah, in a in a morning, what I used to do was put her clothes out in a little pile in front of her, in the order that she needed to put them on. And she could do 80% of that, maybe. So I helped with the stuff that she couldn't physically do. and we made adaptations as best we could. Because the physio that we got, she was Philly Charles. She was another one who was just superb and she helped us with all sorts of things. And we we carried that on through the short time that we had her, you know. We just made her be as independent as she could. And she was feisty. She would tell you if she wasn't happy, you know. so yeah, she she was a little fighter. She was a little fighter and she did the best for herself as well.
