By Rafaela Kuznec @RafaelaKuznec
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Videographer / director: Scott Dulson
Producer: Rafaela Kuznec, Ruby Coote
Editor: Marcus Cooper
Harry Crowther, from Mirfield, West Yorkshire, was diagnosed with Atypical Progeria Syndrome (Non-Classical Progeria) when he was seven years old.
The disease means that he ages prematurely and therefore suffers with similar ailments to elderly people, such as arthritis.
Harry told Barcroft TV: “Progeria affects my health in several ways – I get a lot of issues which older people tend to have.
“I have arthritic pain, I have a deterioration of the bones in my fingertips in my hands.
“I get tired easily.
“I am small for my height.
“Basically, everything somebody’s granddad or grandmother will have.”
Harry’s case is unique - he is the only known male in the world diagnosed with this form of progeria.
Atypical Progeria Syndrome (Non-Classical Progeria) is a genetic condition characterised by the signs of accelerated, and premature ageing.
It means he ages five times faster than normal compared with eight times Classical Progeria, also known as Hutchinson-Gilford progeria.
His symptoms include a short stature for his age, no body fat and similar facial features to children with Classical Progeria.
But unlike others with Classical Progeria, Harry has no hair loss and a longer life expectancy.
Harry explained: “Within the Hutchinson-Gilford, they release the toxin Progeria, which makes them age faster, whereas in my genetic defect for some reason it doesn't release the genetic Progeria, which is very confusing for a lot of people because I'm getting the symptoms of aging faster but I'm technically not genetics wise, which is why I can't obviously use the classical Progeria treatment.
“I have to get separate treatment, which hasn't even been discovered yet.”
Harry’s mother, Sharron Crowther, remembered the time when she first noticed that Harry was different from other kids: “When Harry was about one year old, we noticed some freckling underneath his armpits, some pigmentation.
“We took him to the doctors, they just said it was a birthmark, but I wasn’t happy with that.
“I sought another opinion, and we went to see various experts throughout his young life.
“And it wasn’t until the age of seven when somebody thought it might be Progeria.
“We were sent to America, where we got the diagnosis that it was Atypical Progeria Syndrome.”
Sharron said that countless hospital visits have become a routine to the family: “At the beginning, the medical appointments and visits were a part of our life, but we’re just so used to them, now it’s part of our routine so it just slots into life.”
Harry, like any other young man of his age, loves playing computer games, hanging out with his friends and family, has a great passion for travelling and extremely positive outlook, despite suffering from arthritis that causes constant pain and limited movement in his joins.
He said: “I recently went to Japan with my brother Jack.
“I also have an upcoming trip to Finland.
“Travelling can be pretty difficult sometimes even though I love it so much.
“There are obviously some obstacles when it comes towards travelling.
“But I try like not let it get me down.
“I try to keep going and just have as much fun as possible.”
Harry continued: “I don't really think about it, 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 try to see the brighter side of things.”
Harry together with his mother set up a Facebook group to bring awareness of his condition.
Harry said: “I'd love to bring as much awareness to as possible because that's how basically we found out about my Progeria.
“We learned about Hayley Okines, a girl who had classical Progeria and she did a lot of TV-related content as well.
“She was the first person I met with Progeria.
“She was a big impact on my life.
“And she told me about spreading awareness no matter how big or small it is...”
Sharron, speaking of Harry’s future, told Barcroft TV: “My biggest concern is losing him…
“I just hope that he stays well and he stays healthy like he is now.”
She added: “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.”
Despite all obstacles faced due to his condition, Harry remains positive: “I didn't necessarily feel different.
“I didn't feel like an outcast I just knew I was different from everybody else, but I didn't really feel like that was affecting me anywhere – I still have friends.
“I don't let anything get me down.
“If it's not in my control, what can I do?
“So I just take it as it is.”