Harry: I'm 20 years old, and the only boy in the world with Atypical progeria syndrome.
I get a lot of issues which older people tend to have.
Sharron: My biggest concern is him not being here, just not being here. Sorry
Harry: I don't really think about it, I'm just me.
Progeria a genetic defect, which causes rapid ageing due to the excess release of the toxin progerin,
which everybody has. And that basically makes you age.
But obviously, when we release excess of it, you know, it makes you age faster,
which can cause a lot of problems.
I'm Harry, I'm 20 years old, and the only boy in the world with typical progeria syndrome.
The classical progeria is known as Hutchinson-Gilford progeria.
they release the toxin progerin, which makes them age faster.
Whereas in my genetic defects, for some reason,
it doesn't release the genetic progerin,
which is very confusing for a lot of people because I'm getting the symptoms of ageing faster.
But I'm technically not genetics wise, which is why I can't obviously use the classical progeria treatment.
Nobody else in my family has progeria, it was a random genetic fluke basically.
There is not generic like passing down to parental or grandparental genes.
It was just a complete random chance.
Progeria affects my health in several ways. I get a lot of issues which older people tend to have.
So I have arthritic pains, I have joint pains.
I have a deterioration of the bones in my fingertips, my hands.
I get tired, easily, small for my height.
Basically, everything that somebody’s granddad or grandmother have wrong with them.
So on the terms of medication I’ll take five milligrams of statins a day and 75 milligrams of aspirin a day.
And they're basically just to help with thinning the blood.
I take them pretty much every day, like use this to helps keep track of everything
and which ones I’m taking. Plus you just pop it up and take the pill.
So I was first diagnosed with progeria when I was seven years old.
At the time of diagnosis, I knew something was different about me.
But I didn't really understand what it was I just knew I was different from other kids.
Sharron: Harry is my third born, he is my last child.
We went to see various experts throughout his young life.
And it wasn't until he was at the age of seven
when somebody thought it might be progeria.
And we were sent to America where we got the diagnosis that it was Atypical progeria syndrome.
This condition was explained to us that it was a less severe form than Hutchinson- Guilford.
And they knew that Harry had a short life expectancy.
But they weren't able to tell us at that time how long he was to live.
Harry: I recently went to Japan with my brother Jack.
Obviously with my interest in Japanese anime and manga that was a great experience for me.
I also have an upcoming trip to Finland.
Traveling can be a pretty difficult sometimes even though I love it so much.
But due to all the medication I take so I take a lot of pills and use
my pain killers.
And when it comes to like walking and traveling in general I start to get tired very easily.
That obviously some obstacles when it comes towards traveling but I try and like not let it get me down.
I try to keep going and just have as much fun as possible.
I really like coffee.
Sharron: My biggest concern is in losing you know not being here, just not being here. Sorry.
I worry about all my children's future but I especially worry about Harry’s
because we don't know how long we've got him.
Harry: Well I don't really think about it. I'm just me.
I just, I don't try to bring any attention towards it in my daily life.
I usually make fun of it most of the time. I don't really let it get me down or anything. I just
try see the brighter side of things, I guess.
I walk the dog at least once a day you know just a little bit exercise that helps
with joint pains and exercising my hips especially. It's a good walk to do.
Pretty much have arthritis in every pound on here. So I get pain relief but it's on.
So I have pain constantly every day.
So on a day to day basis, I don't really take any medication, I just, get on with it.
Sharron: Harry’s got a Facebook page called Atypical progeria syndrome.
This was set up by ourselves when Harry was first diagnosed. We wanted to reach out to other families
to see if there are any other families like Harry and needed to raise awareness of the condition.
Harry: I'd love to bring as much awareness to it as possible.
Sharron: It's important to raise awareness for progeria, because we can't believe
that there isn't anybody else like Harry.
Might be somebody that's just waiting to get the diagnosis that you need.
Harry: So, even though we've known each other for years and years and years. What, what do
you actually know about progeria?
Darren: I think not a lot to be honest with you.
I don't think it's not something I've really ever wanted to ask about.
The thing I know about you and your personality. So if you're,
I know if you're down and there's something potentially up with you,
and it's, if you're not down then great. All good to go if you know what I mean? Does it make sense.
Sharron: He just loves life, he loves his life it might not be great,
but he just gets on with it and he enjoys being around people that he cares about.
He enjoys his dog. He enjoys his gaming. He just loves everything about his life.
I think, I hope.
Harry: I like to feel more positive. I don't let anything annoy me or get me down.
Because it’s like if it's not in my control, what can I do? So I just take it as whatever.
My hopes for the future just basically, to live, live a long, happy life with as many people as I can.