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Harrison has an autoimmune disease
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Makes his skin very tight. Can't flex his feet or move his hands at all
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He's the only one in Australia with the form he has and there's only 30 in the world
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Why do you look weird? That's what most people say to me
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I keep telling them that I have a condition. I just want to be stronger
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You're the strongest person I know. Today we're going to a physio class
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It's about prescribing exercise specific to the condition. He makes life look easy
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And it's not for him, but you wouldn't know. Really hope that Christiana will kneel with all seasons
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My mum helps me with getting dressed and putting on my shoes every single day
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It's difficult for me because of my hands. A lot of things that I can't do
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Scleroderma is an autoimmune disease. Harrison has a skin-based scleroderma and he has the rarest form
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He's the only one in Australia with the form he has and there's only 30 in the world
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It's a build-up of collagen in his skin so it makes his skin very tight
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creates contractures in his bones, he can't flex his feet or move his hands at all
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That's why I got bandages on my feet and my hands. It has like scabs under it and that's from scloderma
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There's no cure for this disease. So the medications Harrison has every day is
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The tablet is periactin and that helps his appetite and stops him scratching
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Also has methadone for pain. And the last one is just an antibiotic to stop his skin and get any staph infections
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When I was very young, it used to make it wrinkly and all scratching and stuff
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and skin's starting to peel off and all of that. And your skin was very tight
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It was very tight. They said I had three years to live
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but I was four years old then, and look at me now I 12 So I survived it Lisa when did you realise that Harrison was a talented artist I think from kindergarten probably three he was always very arty
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The longer we spent in hospital, the more he'd sit and draw and colour. When he got his first finger amputated, it was from his right hand
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and he managed to teach himself to be left-handed, and that's how he draws now
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When I do my drawing, it makes me feel like amazing, feel like I could do anything
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Why did you have to have your fingers amputated? Because if I left them, it would be a very, very bad decision
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If I left it, I had to cut off my whole hand
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When they told you that you had to lift some of your fingers, how did you feel? I feel a little bit sad, but I feel like it was for the best
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How many surgeries have you had now? 100. Over 100. So we go in every month to get his bandages cleaned and all washed properly
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and then when he has his ECP or photophoresis he has to go under general anaesthetic and that's
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what saved his life. We started this treatment in December 2020 which is fortnightly at the moment
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They take his blood and clean it and then they put UV rays into the blood and put it through like
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like a solar panel type thing, which gives us a blood product which we re-infuse into his body
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and that stops his condition progressing. It's been very significant for him
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His skin is much looser. He can straighten his legs out. He walked a lot on his tippy toes, so his legs were bent
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I feel much better. I feel energised. I feel like I'm hyped
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I feel very happy. I was the first one to have it in the world, so it was very exciting for trying that out
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Considering everything he's gone through, he just goes on living life like he's normal, if you could call it that
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I think he's pretty courageous. Takes everything on, especially someone with, you'd think of his ability
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Really proves everyone wrong. My mum and dad did everything they can to make me think about all the good things in my life I just very sad that people can have so much fun without me playing sports that I can do
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And I just being on the sidelines, just watching them have fun
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I just want to be stronger. You're the strongest person I know. I'm like good at sports
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You are good at sports. Like I could play with my brothers and I would get hurt
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I'm not. It's all right. I still do plenty of stuff, like doing sports, playing soccer
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Running? Running, I do running. I got to stay cross country last year
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I got a trophy for coming second. So I'm doing a lot of things
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Are you worried about hurting yourself? No, I'm not. I'm not. I'm very strong and I don't care
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I'm going to do whatever it takes. Hi. Hi buddy, how are you
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Good. Good to see you mate. Good to see you too. Ready for physio
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Yeah. Let's go get your shoes on. I actually first met Harrison about six years ago
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when he was at the Royal Children's, I was a nurse there and then
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I've been his support care worker the last year. We hang out a couple of times a week
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we just try to hang out and have fun and also we go to physio
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osteo. Today we're going to a physio class. The therapy Harrison receives every week
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he'll get a massage with the osteo and then he has exercise class with May just to keep
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his body flexible and moving. Do people ever say anything negative to you about your condition
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Some people stare at me in public. Most of the kids, even teenagers stare at me sometimes
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a lot of adults do it. They don't just have a quick look, they're like fully, fully stare and it's like I just find it really rude. I get it they're interested
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and talk to him. You don't have to just stare at him and make him feel uncomfortable
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Why you look weird That what most people say to me Why does she hands look like this Why do you have bandages on Like all those I keep telling them that I have a condition but they won listen They don understand what I go through
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Yeah, it's confronting sometimes, but we just get on with it, don't we? Yeah
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If you see a disability, don't stare at them. Don't call them names. Just please don't do that
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Be kind. Just be kind. Not hard, is it? Not hard. How's your body feeling today? Good. Good? Are your feet okay? They're not too sore today? No. No
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He's getting a lot stronger and he's had a bit of a few ups and downs the last kind of 12 months
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with pain but he's been able to maintain his strength and his fitness and exercise capacity
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which is what something that we're starting to work on a little bit more now. About prescribing
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exercise specific to the condition so for H it's about keeping him mobile, keeping him strong
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keeping him active for as long as possible and having a bit of fun while we do it
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So I just love playing soccer. That's my main sport. And I really hope that Christiana
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will kneel to all season. How proud are you, Harrison? Don't cry
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Whew. Super proud. He's an incredible person. After all he's been through, he still smiles and lights up a room
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And I just wish everyone to just take a page out of his book
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because he makes life look easy and it's not for him. But you wouldn't know
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Just love you. People love you. I just love helping people, taking care of people and all of that
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What would you like to tell other kids who have severe conditions as well
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Just please don't give up. We got this. I'm here for you
