12-YEAR-OLD social media star Harrison was born with scleroderma, an autoimmune condition which causes a build up of collagen in his skin and makes it "very tight." Harrison's specific form is so rare that there are only 30 people in the world known to be living with it and he is the only person in Australia. There is no cure for the condition and, at the age of four, doctors gave Harrison just "two years to live." Although he has defied the odds, Harrison has had to have fingers amputated and his joints have contractures, meaning "he can't flex his feet or move his hands at all." But in recent years Harrison has been able to undergo a treatment which has "saved his life" - every two weeks he goes under general anaesthetic while doctors clean his blood, treat it with ultraviolet light and then reinfuse it back into his body. With the new lease of life the treatment has given him, Harrison has thrown himself into his interests as a keen artist and sportsman - talents that led to him meeting one of his heroes, Aussie Rules player Dyson. As the pair became inseparable friends, they launched fashion brand 'Haych' together, with each clothing item featuring artwork created by Harrison. Proceeds from sales go towards a bucket list of dreams that Harrison wants to fulfil, but he is also using the brand to address judgement he and other young people with disabilities receive. People often ask him "why do you look weird?" and he receives stares when out in public, but Harrison wants people to "just be kind." With around 100,000 followers and growing, his positive messages are spreading far and wide online - and mum Leesa could not be more proud of him: "He's an incredible person and I just wish everyone could take a page out of his book because he makes life look easy and it's not for him, but you wouldn't know."
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https://www.instagram.com/haychthelabel
https://www.tiktok.com/@haychthelabel
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FunTranscript
00:00Harrison has an autoimmune disease.
00:02Makes his skin very tight.
00:04He can't flex his feet or move his hands at all.
00:07He's the only one in Australia with the form he has and there's only 30 in the world.
00:11Why do you look weird?
00:13That's what most people say to me.
00:15I keep telling them that I have a condition.
00:18I just want to be stronger.
00:20You're the strongest person I know.
00:22Today we're going to a physio class.
00:24It's about prescribing exercise specific to the condition.
00:28He makes life look easy.
00:30And it's not for him.
00:32But you wouldn't know.
00:33I really hope that Christiana and Neil all seasons.
00:39My mum helps me with getting dressed and putting on my shoes every single day.
00:46It's difficult for me because of my hands.
00:49A lot of things that I can't do.
00:52Scleroderma is an autoimmune disease.
00:55Harrison has a skin-based scleroderma
00:57and he has the rarest form.
00:59He's the only one in Australia with the form he has
01:02and there's only 30 in the world.
01:04It's a build-up of collagen in his skin.
01:06So it makes his skin very tight.
01:08Creates contractures in his bones.
01:10He can't flex his feet or move his hands at all.
01:13That's why I got bandages on my feet and my hands.
01:16It has like scabs under it and that's from scleroderma.
01:20There's no cure for this disease.
01:23So the medications Harrison has every day is the tablet is periactin and that helps his appetite and stops him scratching.
01:36Also has methadone for pain.
01:38And the last one is just an antibiotic to stop his skin and get any staph infections.
01:46When I was very young it used to make it wrinkly and all scratchy and stuff and skin starting to peel off and all that.
01:58And your skin was very tight?
02:00It was very tight.
02:02They said I had three years to live but I was four years old then and look at me now, I'm 12.
02:09So I survived it.
02:12Lisa, when did you realise that Harrison was a talented artist?
02:18I think from kindergarten, probably three year old, he was always very arty.
02:23The longer we spent in hospital the more he'd sit and draw and colour.
02:27When he got his first finger amputated it was from his right hand and he managed to teach himself to be left handed and that's how he draws now.
02:35When I drew my drawing it makes me feel like amazing, feel like I could do anything.
02:41Why did you have to have your fingers amputated?
02:43Because if I left them it would be a very, very bad decision.
02:49If I left it, I had to cut off my whole hand.
02:53When they told you that you had to lift some of your fingers, how did you feel?
02:56I feel a little bit sad but I feel like it was for the best.
03:02How many surgeries have you had now?
03:04One hundred.
03:06Over a hundred.
03:07So we go in every month to get his bandages cleaned and all washed properly.
03:13And then when he has his ECP or photophoresis, he has to go under general anaesthetic and that's what saved his life.
03:20We started this treatment in December 2020, which is fortnightly at the moment.
03:24They take his blood and clean it and then they put UV rays into the blood and put it through like a solar panel type thing.
03:32And which gives us a blood product which we re-infuse into his body and that stops his condition progressing.
03:38It's been very significant for him. His skin is much looser. He can straighten his legs out.
03:44He walked a lot on his tippy toes so his legs were bent.
03:47I feel much better. I feel energised. I feel like I'm hyped. I feel very happy.
03:54I was the first one to have it in the world so it was very exciting for trying that out.
04:00Considering everything he's gone through, he just goes on living life like he's normal, if you could call it that.
04:07I think he's pretty courageous. Takes everything on, especially someone with, you'd think of his ability.
04:15It really proves everyone wrong.
04:18My mum and dad did everything they can to making me think about all the good things in my life.
04:27I'm just very sad that people can have so much fun without me playing sports that I can't do.
04:34And I've just been on the sidelines just watching them have fun.
04:39I just want to be stronger.
04:41You're the strongest person I know.
04:44I'm like, good at sport.
04:46You are good at sports.
04:48Like, I could play with my brother instead of getting hurt.
04:51I know. I know.
04:52Enough.
04:55It's all right.
04:57Still do plenty of stuff.
04:58Like doing sports, playing soccer.
05:01Running?
05:02Running, I do running.
05:03I got to stay cross country last year.
05:05I got a trophy for becoming second.
05:08So I'm doing a lot of things.
05:10Are you worried about hurting yourself?
05:12I'm not.
05:13I'm not.
05:14I'm not.
05:15I'm very strong and I don't care.
05:17I'm going to do whatever it takes.
05:23Hi.
05:24Hi, buddy.
05:25How are you?
05:26Good.
05:27Good?
05:28Good to see you, mate.
05:29Good to see you too.
05:30Ready for physio?
05:31Yeah.
05:32Yeah, let's go get your shoes on.
05:33Okay?
05:34I actually first met Harrison about six years ago when he was at the Royal Children's.
05:39I was a nurse there and then I've been his support care worker the last year.
05:44We hang out a couple of times a week.
05:46We just try to hang out and have fun and also we go to physio, osteo.
05:50Today we're going to a physio class.
05:52The therapy Harrison receives every week.
05:55He'll get a massage with the osteo and then he has exercise class with May.
06:00Just to keep his body flexible and moving.
06:03Do people ever say anything negative to you about your condition?
06:07Some people really stare at me in public.
06:10Most of the kids, even teenagers stare at me sometimes.
06:14A lot of adults do it.
06:16They don't just have a quick look.
06:17They like fully, fully stare and it's like, I just find it really rude.
06:22I get it.
06:23They're interested and talk to him.
06:25You don't have to just stare at him and make him feel uncomfortable.
06:28Why do you look weird?
06:29That's what mostly people say to me.
06:32Why does your hands look like this?
06:35Why do you have bandages on?
06:37Like all of those.
06:38I keep telling them that I have a condition but they won't listen.
06:43They don't understand what I'll go through.
06:45Yeah, it's confronting sometimes but we just get on with it, don't we?
06:51Yeah.
06:52If you see a disability, don't stare at them.
06:56Don't call them names.
06:58Just please don't do that.
07:00Be kind.
07:01Just be kind.
07:02Not hard is it?
07:03Not hard.
07:04How's your body feeling today?
07:06Good.
07:07Good?
07:08Are your feet okay?
07:09They're not too sore today?
07:10No.
07:11No.
07:12He's getting a lot stronger and he's had a bit of a few ups and downs the last kind
07:16of 12 months with pain but he's been able to maintain his strength and his fitness
07:21and exercise capacity which is something that we're starting to work on a little bit more
07:25now.
07:26It's about prescribing exercise specific to the condition.
07:29So for H it's about keeping him mobile, keeping him strong, keeping him active for as long
07:34as possible and having a bit of fun while we do it.
07:37So I just love playing soccer.
07:39That's my main sport.
07:40And I really hope that Christiana will kneel with all seasons.
07:45How proud are you of Harrison?
07:48He's an incredible person.
07:49After all he's been through, he still smiles and lights up a room.
07:55And I just wish everyone could just take a page out of his book because he makes life look
08:02easy and it's not for him.
08:04But you wouldn't know.
08:05But you wouldn't know.
08:06Just love you.
08:07People love you.
08:08I just love you.
08:09I just love helping people, taking care of people and all of that.
08:15What would you like to tell other kids who have rare conditions as well?
08:16Just please don't give up.
08:17We've got this.
08:18I'm here for you.
08:19I'm here for you.
08:20I'm here for you.
08:50I'm here for you.