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.
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