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.
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