- We are the Singh Family. - A happy little family. Really calm at times. (CHUCKLES) But it can be really noisy as well. Neil is a little firecracker. And he lights up the room whenever he enters the room. - Living with muscular dystrophy has opened my eyes, like, to what other people with disabilities live with. - Duchenne is a genetic disorder. - At the moment, Neil is walking and running and playing. However, he is getting really tired, and he is in a lot of pain when he has a full-on day, so things are getting difficult for him. - Three, two, one. Looking this way. - We've got a muscular dystrophy camp coming up, and we are really excited he gets to meet other children with the same condition. Captions by James Brown. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 - So, yeah, this is my room. And first thing I'm going to show you is my collection of jerseys. As you can tell already, I'm wearing a Brazil jersey. - Neil's life is football. Everything about him is football. He's got about 10, 12 jerseys. - Argentina. As you can tell, Messi all day, any day. But, um, the goalkeeper's good as well. - He just talks about soccer. He lives soccer. He drinks soccer. He watches soccer. Everything is soccer. - This is my World Cup ball. I've got all these skills I can do. I would hit some of the equipment if I shoot, so I'd avoid that. But, like, this is how I usually shoot. That was a perfect shot. And as you can see, I do very good touches. Here are my goalkeeper gloves. - As the condition progresses, it might be hard for them to do their daily activities, like getting up from the floor, sitting down on the floor or eating with their own hands. Right, like, if there's a shot, this is, like, what I do. So look. So, like, you saw how I reached out my arm. I can still walk, and I usually try and conserve my energy. So I sometimes walk, but I sometimes use my wheelchair. (LIGHT-HEARTED MUSIC) But as I mentioned, I am very sporty. OK, I guess I'll be the new Casillas today. - I see. - Casillas is the best keeper of all time, and my favourite keeper. - Why does it keep changing? - Well, Casillas is retired. - Duchenne is a genetic disorder, which is a X-chromosome-related condition, which gets passed on from Mum to the boys. It is a degenerative condition, where the muscles start degenerating. And because of that, they might find it difficult to walk or jump. We'll start from there. - OK, sure. - The condition wastes the muscles. So anything that you can think about that you do with your body breaks muscles and our body is designed to make the muscles again, repair the muscles. Whereas with Duchenne, your muscles do not get repaired, they accumulate as scar tissues. - That makes them, like, very slow and very tired if you walk and run a long distance. And for some people, they stop walking. - In India, disability is not visible. It's hidden away. So if a person is disabled, they are not out and about in the public as much, so you don't realise how many people are disabled. - After the recent World Cup, he has developed a love for soccer. He likes being a goalkeeper, so he'll try to save the goals to the best of his possibility. He wants me to be as hard on him as possible, so that he can be better as a goalkeeper. We practise some drills regularly, so that he can good at dodging the ball from different players. Sometimes I've noticed that he's still not able to accept it, as a kid, and he still thinks that he can do everything like other kids. A classic example is he still wants to be a soccer player. - When I grow up, I want to be a professional footballer, winning the World Cup for New Zealand, winning the Champions League for Manchester City or Real Madrid. - We try to explain that to him, but he still thinks that he can become, so to that extent, sometimes he's not able to accept his condition. And sometimes I've heard him saying, 'It's rubbish. I hate muscular dystrophy,' and things like that, so I think he doesn't like it. He doesn't like being different to other kids. - Well, if I can't be a football player, probably a football commentator. - When we were pregnant with Neil, we didn't know that I was a Duchenne carrier. Neil was overdue, and he was a forceps delivery. He didn't really want to come out. And Neil was always a slow learner, in terms of physical strengths. I got a specialist appointment at Starship. The Starship doctor checked him over. And luckily, or unluckily, she knew about Duchenne. Everything just broke down in front of us. It was like somebody giving a death sentence to a child and just telling us that our child can't live any more. I was grieving when I found out that I was a carrier. So basically I just blamed myself for, you know, giving him the condition and giving him the life he has to go forward with. Kuldeep is a really supportive person. Whenever I blamed myself for the diagnosis, he was always there and, you know, held my hand and told me that it wasn't because of me. With Neil we have had conversation about his condition, but we only give him the information that he needs at his age. So if he comes up with a question, we never lie, we give him the true information. However, we do not tell him what the future holds ` because we don't know what the future holds. We're making soycha with rice and chapatti. It's basically a kind of fake chicken curry. Neil and Aarav? So, we live in an extended family. Our household is really active. Things are happening at all times. Living in an extended family is a common thing that we do in Indian culture. That's just how we are brought up, and that's how we start living when we get married as well. - I'm Divya. I'm Yasha's sister-in-law. So we are married to brothers. A little balloon. It's softer. When Neil got this, there was another level of awareness that I came across, because I would see kids like that, I would see people like that, but I wouldn't be able to fathom what would have happened to them. But with Neil, it's a completely different thing, because he's like family. - Get a bowl. Get a plate. Over there. Welcome to kitchen. - It has taught my son as well how to be empathetic towards people with any kind of disability. Yeah. You know, I have seen him as my own child. There is a difference of only two months. So I can't really feel like, you know, he's my nephew. He's like my own son. - From 2021 to 2022, he did not gain any height at all. So we did some testing and we found that he was growth hormone deficient. So his endocrinologist told us to start giving him the growth hormone so that it helps gain some height, because that was one of the major things that Neil was concerned about, and that would boost his confidence as well. This is Neil's growth hormone medication. And it's basically a pen injection. - So, today was a good day, but I forgot to tell you. - What did you do at school? - Running. - How many laps? - We do injections in the evening. He specifically requests this numbing cream, so we pop that numbing cream an hour and a half before the injection time, and he has it about an hour before he goes to sleep as well. - Sensitive plasters. So about the injections, I find them a bit of a hassle, having to take them daily, because I have to remember to put numbing cream, because, well, I don't mind needles, but it's a bit annoying having to take an injection every day. - What is that? - It's a group. And guess what I get to do? - What do you do in that practice, Neil? - You'll see. Can you bring Kabir? - Absolutely I will. - My favourite football player has to be Lionel Messi. Messi used to take growth hormone injections, and I also take those injections daily. - The injection is a task most of the days, because obviously it's poking into his body every day, and a child can only take as much. (GENTLE MUSIC) - School time, Neil. - Seems like you'll get better today. In the morning I wake up, brush my teeth and get changed, go and eat breakfast, take my medicine and wheel to the bus stop. - The morning in our house is a little chaotic. But Neil is very, very independent. He wakes up, he comes out of his room all dressed up in his uniform. And he has his breakfast, puts the dishes away, and then he's off. He just says, 'Bye, Mum,' and takes his wheelchair to the bus stop. - Goodbye, squeal. - Goodbye, squeal. - Wheeling to the bus stop is quite new. Going on the bus makes me feel independent, but also I enjoy it cos I get to talk to my friends. (LIGHT-HEARTED MUSIC) - Neil has just started intermediate school. - Remember, we want to get the high points and know what the points are for. - It is a new school and a new life for him. It's completely different to primary school. We chose to send him to Waikowhai Intermediate because they are more accepting of children with disability. - This goes here, and the pyramid goes in the middle. - They have got a smaller unit for cerebral palsy. So the children are aware of other children being on wheelchair and how that can look in their day-to-day life at school. - About the school and my disability, it is quite cool, because it's very accessible. When I'm at school, I usually use my wheelchair to get around. But in class, I use my legs. Hi. - Hey, bud. - Neil, how are you? - I'm super good. - Nice. - Welcome back to school. - I really enjoy it. - I just met your new TA, Vunga. - Yeah. - Hi! - We have got the occupational therapist and the physiotherapist involved in Neil's life. The physiotherapist basically comes to school and teaches his teacher aides on how to do his stretches. - So, Neil, do you remember the stretches that you did last year? - Definitely. - OK. OK. Excellent. There is one that involves the wall. Do you remember that one? The goal is to focus on maximising his functional ability. So with that, I just want to elongate the muscles. Perfect. Lean forward and bend the back knee. Neil is independently ambulating ` so he's walking by himself. That feels OK, Neil? - Mm-hm. - He does fatigue easily, so we do take that into consideration. And there are some muscles that are tight right now, so we're looking at maintaining their length. I'm gonna take your shoes off. Is that OK? - Yeah. - Perfect. This is a manual handling technique. - Right. A very gentle stretch. And what I'm gonna do is cup Neil's heel in the palm of my hand. You're just gonna gently` You're not pushing down. You're just stabilising right above his knee. Perfect. It's very important for Neil to come out of the chair, to stand and walk around, and when he fatigues, he returns to his chair for a rest break. - Finally, I got it. - Football being his dream and football being his life, he's very passionate about it, but he does have some limitations. - Hi, guys. Wait, guys! I'll be the ref! - So when he does participate in the whole sports thing, he umpires. - If I blow my whistle, that means stop play. If I blow it after a goal, that means it's a goal. If I don't blow it after a goal, it's a no goal. Today I played some football on the turf. And, um, like, everyone thought I was a good referee. Are you guys ready? - Yeah. - (BLOWS WHISTLE) - Go, Joel! - There were a lot of fouls that happened... (BLOWS WHISTLE) Handball! (BLOWS WHISTLE) Kick when ready! Goal! ...and three goals scored. (LIGHT-HEARTED MUSIC) Some kids play quite aggressively, so the referee is the only way to stay a bit safe. The play might get intense. - I think it's a challenge every day, because to be part of the other kids' routine, he has to push himself if he wants to tag along with them in the school during the break times or in PE. - There are days when we wish that he did not like sports and he would like something like chess or sitting down and reading a book. But he's not that child. - They're actually not that bad. - He wants to run around like any other child out there. He comes home and he says, 'I couldn't do that because I was just too tired.' So it's hard. - (BLOWS WHISTLE) (GENTLE MUSIC) - We're at the muscular dystrophy camp today. This camp is for families who have got people with muscular dystrophy. - Oh, I love colouring! I'm addicted to colouring. - So we can meet other people in a similar boat that we are in and, you know, just go through the journey together. Their upper body strength is not that good, either. The boys meet other children with the same condition ` you know, just feel more at home. - Yes! - When you have a kid with a condition, you feel lonely. You self-doubt quite a lot of times, whether you're doing it right, whether you're taking the right decision for your kid or not. A camp like this, it just gives you self-validation that other people are in the same boat, and they're going through the same journey, they're doing kind of the same thing, so it just reassures you that you're not doing it wrong. When we were diagnosed, we met other people in the same situation who had children with Duchenne muscular dystrophy. And without saying anything, they just got it. You know, our family is lovely, but only parents who are going through the same situation can understand. Other people try to, but they can't really understand it. Sorry. Opportunities like this camp gives us the opportunity to connect to other people where we can talk about what we're feeling, what are we looking at, what's the past been like and what the future is like. - It's so cold! I'll just get used to it real quick. Just get used to the water. I'm getting used to it. - If we are stuck at some point, what can we do about it? - (BLOWS BUBBLES) It's so nice! Try it. You'll actually get used to it. - Neil is quite mobile. Like, he can run, he can walk. He does like swimming, because that makes the walking and the running more easier, and one of the sports activities where he can actually perform his best. - This is so fun! - I just want him to be independent, and if he's doing some things, he's not dependent on anyone, and he can be confident in going in water himself and just being himself and just enjoy the part of just being in water on a hot day like this, rather than just me worrying about whether he'll be safer in the pool, if he's just going on his own and things. So I just love that part. I'm very happy about that. - When Neil interacts with other children at the camp, it's absolutely lovely. He's so himself. He loves to joke around. He rides his wheelchair around the camp and he enjoys himself to the utmost. He enjoys every activity he does with the other children. So it's really nice to see that happening. It's hard for a child of Neil's age to understand and accept his condition. When he's in a setting like this camp, and he sees other children in a similar situation as he is, and he doesn't feel out of place, he can see other children are on wheelchair and they're struggling the same way that he's struggling. - Merry Christmas, brother. (APPLAUSE) - I don't think too much about it, because I don't have any control over it. And with this condition, there are a lot of things that are very different to each kid ` it is affecting them differently. So I don't know how it will be in a couple of years from now, in five years from now. However, I wish he can still carry on with all of this. - Neil. Come on, buddy. - This part's good. - Yeah, come out. Let's see how good you are. On the spot. - And I don't want to think too much about it, anyway. - Merry Christmas, mate. - Thanks. (APPLAUSE) - I just want to help him as much as I can. - From Santa today I got this Lego Creator set. You know, something cool, at least. - Three, two, one. Looking this way. (ALL CHEER) - It's hard to safeguard Neil from anything that's due to happen. Because if I safeguard him here, he will face it somewhere else. You know, life goes on, and as much as I would like to wrap him in cotton wool and protect him from everything that can affect him emotionally or make him struggle emotionally, I can't protect him everywhere. (GENTLE PIANO MUSIC) Neil wants to become a soccer player when he grows up. Looking at the diagnosis, the possibility of him competing as a football player looks highly unlikely, unless there's a drug that comes along that can just take away the effects of Duchenne. But we are still giving him the opportunity to participate and try his level best. - Sometimes I get a bit scared about not walking, as I really wanna be a football player, and that will affect it a lot. - I don't know. Like, we don't give it too much of a thought. We just want him to be a good person, and we just don't want the condition to define him. We just want him to make that call himself and do everything that he wants in his life. - As any parent with a child with disability, we are really nervous about what the future holds for us. But we take each day as they come. You know, we keep enjoying our family, you know, enjoying Neil grow up into his personality, which is really bubbly and, you know, enjoy every day as it comes.