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19-YEAR-OLD TikTok sensation Harry was born with an ultra-rare genetic condition called neuroblastoma amplified sequence (NBAS). The symptoms of the condition are wide-ranging, as Harry's mom Rebecca told truly: "It affects many, many aspects of his body - he's registered blind, he's a type 1 diabetic, he's autistic, he's got brittle bones as well." In addition, Harry's immune system is severely compromised, so he sits through a one-hour-long infusion once per week to help fight infections and keep him out of hospital. Rebecca and Harry's dad Christian have provided 24-hour care for their son throughout his life, helping him with everything from getting dressed to preparing food - but since he turned 18, Harry's independence has become a key priority. With an unrivalled passion for dinosaurs and animals, Harry was adamant he wanted to share his encyclopaedic knowledge with the world - and while Rebecca was fearful of the response from people online, she embarked on the journey into TikTok with Harry. His account is now closing in on a million followers and his comments section has been filled with overwhelmingly positive feedback, but some comments have caught the family off guard - particularly around Harry's perceived age. As Rebecca explained: "People have said they can't tell whether he's five or he could be 55. He's quite a gentleman, he's quite old-fashioned." The family haven't let this phase them at all and they are now hoping to use their platform to raise money for research into Harry's condition to help other families in the future. Because the condition is so rare - "almost impossible, in fact" as Harry describes it - funding has run out and the family have set up a fundraising page in the hope of resuming research as soon as possible. In the meantime, Harry is preparing to start farming college later this year - a "perfect" fit for such an animal lover - and regardless of what comes next, Harry knows that being "unique" is something to be proud of above all else.
Please consider donating to Harry's fundraiser to support medical research into NBAS: https://www.justgiving.com/page/rebecca-ellis-1698474212706
Follow Harry on TikTok: https://www.tiktok.com/@sopharry0
Videographer: Scott Dulson
Producers: Kim Nguyen, Tom Buckman, Courtney Buabeng
Editor: Renee Wong
19-YEAR-OLD TikTok sensation Harry was born with an ultra-rare genetic condition called neuroblastoma amplified sequence (NBAS). The symptoms of the condition are wide-ranging, as Harry's mom Rebecca told truly: "It affects many, many aspects of his body - he's registered blind, he's a type 1 diabetic, he's autistic, he's got brittle bones as well." In addition, Harry's immune system is severely compromised, so he sits through a one-hour-long infusion once per week to help fight infections and keep him out of hospital. Rebecca and Harry's dad Christian have provided 24-hour care for their son throughout his life, helping him with everything from getting dressed to preparing food - but since he turned 18, Harry's independence has become a key priority. With an unrivalled passion for dinosaurs and animals, Harry was adamant he wanted to share his encyclopaedic knowledge with the world - and while Rebecca was fearful of the response from people online, she embarked on the journey into TikTok with Harry. His account is now closing in on a million followers and his comments section has been filled with overwhelmingly positive feedback, but some comments have caught the family off guard - particularly around Harry's perceived age. As Rebecca explained: "People have said they can't tell whether he's five or he could be 55. He's quite a gentleman, he's quite old-fashioned." The family haven't let this phase them at all and they are now hoping to use their platform to raise money for research into Harry's condition to help other families in the future. Because the condition is so rare - "almost impossible, in fact" as Harry describes it - funding has run out and the family have set up a fundraising page in the hope of resuming research as soon as possible. In the meantime, Harry is preparing to start farming college later this year - a "perfect" fit for such an animal lover - and regardless of what comes next, Harry knows that being "unique" is something to be proud of above all else.
Please consider donating to Harry's fundraiser to support medical research into NBAS: https://www.justgiving.com/page/rebecca-ellis-1698474212706
Follow Harry on TikTok: https://www.tiktok.com/@sopharry0
Videographer: Scott Dulson
Producers: Kim Nguyen, Tom Buckman, Courtney Buabeng
Editor: Renee Wong
Category
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FunTranscript
00:00Hey everybody, it's me, Harry.
00:02Harry's got a condition called Neuroblastoma Amplified Sequence.
00:05It affects many, many aspects of his body.
00:08How old are you?
00:0919.
00:10People have said they can't tell whether he's 5 or he could be 55.
00:14He's quite a gentleman, he's quite old-fashioned.
00:16So what did we want to talk about today?
00:18Commodal Dragons.
00:20Yes.
00:20What do you like about going on TikTok?
00:21The fun.
00:22I'm here to talk to you all about the T-Rex.
00:26I was worried that people might be mean, but was I wrong?
00:29Actually, yes. Tell me how wrong you were.
00:31I was so wrong. Couldn't have been more wrong.
00:33As much as I'd like to shield him and protect him from things,
00:37he's still an adult who's got to find his own way in life.
00:41Harry needs an infusion once a week because he's got a compromised immune system.
00:46And since he's been having it, he's only maybe been hospitalised twice.
00:51It's literally a lifesaver.
00:54Okay?
00:55Let's do it.
00:56Are you ready?
00:56Let's do it.
00:57One, two, three.
00:59First one.
01:00You don't run quite slowly.
01:01Do you want me to do it faster?
01:03A bit faster.
01:03A bit faster.
01:04Okay.
01:05One, two, three.
01:06There we go.
01:06That was better.
01:07Was that better?
01:08Oh, okay.
01:08Good.
01:10Hey everybody, it's me, Harry.
01:12What else do I say?
01:13How old are you?
01:1419.
01:15Yeah.
01:15I might be 20 soon.
01:17Yeah, you might be 20 soon, yeah.
01:19And what's interesting about you, do you think?
01:21I'm small.
01:22You are quite small, aren't you?
01:23Do you know how tall you are?
01:253 foot 10.
01:263 foot 10.
01:27Yeah?
01:27You ready?
01:28Yes.
01:29One, two, three.
01:31Harry's got a condition called ENBAS.
01:33So that stands for neuroblastoma amplified sequence.
01:38It affects many, many aspects of his body.
01:40Pretty much all of them.
01:41He's registered blind.
01:43He's a type 1 diabetic.
01:44He's autistic.
01:46He's got brittle bones as well.
01:48How long do you have to sit there for your infusion, Harry?
01:51You tell him, I don't know.
01:52Yeah, so it takes about an hour to go through, doesn't it?
01:55Yeah, it's only an hour.
01:56Yeah, it's not too long.
01:57There we go.
01:58Do you want your headphones?
01:59Yes, please.
01:59Yes, please.
02:00Okey-doke.
02:01I think at about three months old, he'd just got a normal checkup.
02:06And the doctor said, it doesn't look right to me.
02:09It took about, I think about 10 years for him to get a proper diagnosis.
02:14How rare is the condition you have?
02:16Very rare.
02:18It is.
02:18It's almost impossible, in fact.
02:21Yeah, not many, is there?
02:22They started researching to embass, but then funding ran out.
02:27There's us and another family as well that are currently trying to raise funds
02:32to keep the research going because it's so rare that we know of there's 20 cases worldwide.
02:40Shall we unplug you?
02:42Are you ready? One, two, three.
02:44All right, you can go and get dressed.
02:45It's pretty much 24-hour care with Harry.
02:48It's like every part of his disability has some sort of impact.
02:53On his day-to-day.
02:55There's one arm.
02:58Two arms.
02:59Okay.
03:00Okay.
03:02But at the same time, he's also very easy to look after because of his autism.
03:08Because everything is so structured with him.
03:10Are you ready for some lunch?
03:11Yes, lunchtime.
03:12Yes, what do you fancy?
03:14A ham sandwich.
03:16It's quite easy doing like his food because he's so specific.
03:20Has to be a certain type of butter and a certain type of bread.
03:24But that's it, ham sandwich and half a pint of milk.
03:28Can you manage?
03:29Yes.
03:30Yeah.
03:31There you go.
03:32Is that all right?
03:33Sure.
03:34People have said they can't tell whether he's five or he could be 55.
03:39He's quite a gentleman.
03:40He's quite old-fashioned.
03:42His little phrase is, it's important to be accurate.
03:45What are we doing later, Harry?
03:47I don't know.
03:48No?
03:48If the weather stays nice, do you want to go and feed the ducks?
03:51No, I'm not going on that walk.
03:54Go in the car then.
03:55If we drive down, that would be so much better.
03:57Yeah, we can drive, it's fine.
03:59It's not a problem.
04:00I'm never walking down there ever again.
04:02Oh, okay.
04:03And when I say ever, I mean never.
04:06Okay.
04:07He doesn't really socialise with adults his own age.
04:10You know, my friend's daughter is a good friend of his, but she's seven.
04:16Because of his learning disability and his learning delay, they get on great.
04:20Do you like being different from other people, Harry?
04:23Yes, but the thing is, if I was in the city by myself,
04:30I bet some ruffians and thugs would find it easier to pick on me.
04:34Ruffians and thugs might find it easier to pick on you.
04:37Yes.
04:37But you wouldn't really be on your own, would you?
04:41No.
04:42You've always got me with you, haven't you?
04:44I meant if I was on my own.
04:45If you were on your own, yeah.
04:47When he was younger, it was particularly teenage kids that could be quite cruel.
04:53So, you know, getting on buses at school pick-up times and stuff were really difficult.
04:58Whereas now, because of his TikTok...
05:00Hey everybody, it's me, Harry.
05:03It's now, are they looking at him because he's different,
05:06or are they looking at him because they recognise him?
05:09Three, two, one, go.
05:11Hey everybody, it's me, Harry.
05:13Hello, how are you?
05:14I'm fine.
05:15Okay, so what did we want to talk about today?
05:18Komodo dragons.
05:19Yes.
05:19Komodo dragons are cannibals.
05:23They're not.
05:24Yes, they are.
05:24Oh, that's gross.
05:26What do you expect? It's nature.
05:28True.
05:28And there's nothing you can do about it.
05:30I know.
05:31I had massive pause for thought about TikTok.
05:33I was like, nope, absolutely not.
05:35People will be awful.
05:38And then when he got to 18, as much as I'd like to shield him and protect him from things,
05:43he's still an adult who's got to find his own way in life.
05:46And this was something he really wanted to do.
05:50What do you like about going on TikTok?
05:53Fun.
05:53What is it that you like saying there?
05:55What do you like to talk about?
05:56Dinosaurs.
05:57Yeah.
05:58Tell me about when you thought I went on TikTok for the first time, about everybody.
06:03Yeah, I was worried, wasn't I, about people?
06:06Yes.
06:06I was worried that people might be mean, but was I wrong?
06:11Actually, yes. Tell me how wrong you were.
06:12I was so wrong. Couldn't have been more wrong.
06:15You get lots of messages from all over the world, don't you?
06:18I wouldn't say I'm famous.
06:20No. What do you think makes someone famous?
06:22I don't know.
06:24Would you like to be famous?
06:27No, no.
06:28I'm not doing this for fame and glory.
06:30No. What are we doing it for?
06:32Fun.
06:32Just for fun.
06:33It's lovely that other people can see what we get to see every day.
06:38And they get to see the stroppy side of him as well.
06:41Because he calls a spade a spade, he can be a bit brutal at times.
06:46Let's have a look. Make sure we've got everything.
06:49Diabetes kit.
06:51Food for the dogs.
06:53Drugs to get your cane.
06:59OK.
07:01Right, are we ready?
07:02Yes.
07:03Yeah, right, let's go then.
07:04Why do we have to do things perfectly?
07:07Because it's good to be accurate.
07:09Hey, you can't accurate me. I'm the one who's accurate.
07:15What's so funny?
07:16You.
07:18Harry starts farming college in September and we are very excited about it.
07:24Looking around placements for him for once he left school was just like,
07:28what are the choices for people with disabilities?
07:31And then somebody mentioned a farming college and it was just perfect.
07:36It looks like they remembered me.
07:38I think they have remembered you.
07:40Oh, look, they're all coming over now.
07:43Oh, they know.
07:45What are you looking forward to about college?
07:47Which bits do you think you're most excited about?
07:50The animals.
07:50The animals.
07:52My hopes for him are just for him to enjoy his life.
07:57You know, there's no expectation of him.
08:01He can do whatever he wants.
08:04It is a life-limited condition.
08:06We don't know to what extent.
08:08So it's very important to us that he just has a great time.
08:13I'm unique.
08:14You are unique.
08:16I'm different.
08:17Yeah.
08:18Does it make you feel special being different?
08:20Yes.
08:21You don't have to be put in a box.
08:25You don't have to conform, do you?
08:27You can be and do anything you want, no matter what, you know,
08:31what your differences might be.
08:32Because you can do anything you want, can't you?
08:35Yes.
08:35Yeah, you can be anything you want.
08:38Yes.
08:38Yeah.