An "outgoing teenager" now struggles to walk more than 100 yards without needing his wheelchair after his "devastating" diagnosis.
As a toddler, Clark Doyle, now aged 14, from St Helens, would struggle to sit up right and was late learning how to walk.
But it wasn't until the age of four that Clark was diagnosed with a genetic disorder called Duchenne muscular dystrophy (DMD) which gradually causes the muscles to weaken leading to an increasing level of disability.
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Dad Mike, 39, said he and wife Katy knew nothing about the progressive muscle wasting disease and were "devastated" by the news, but have worked to give him "the best life that they could."
Mike, told the ECHO: "We noticed the symptoms from the age of about two really. We noticed there was something not quite right and he was diagnosed when he was four.
"It was minor things at first like he couldn't sit up straight, he would fall over and was walking really late and things like that.
"We didn't know anything about the condition at all. It was devastating, it really shook us up.
"But we sort of rallied around together and it didn't keep us down for long. We just decided that we were going to try and give him the best life that we could."
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Mike said that it's only been in recent years that Clark has begun to understand his condition.
During the first lockdown, Clark had to completely self-isolate for three months which Mike said was a struggle, but that he has "become himself again" since restrictions eased.
Mike said: "He's still walking, but he can't walk very far and every passing year the distance he can walk just shortens and shortens to the point where now he can’t walk more than 100 yards without needing his wheelchair.
"He still does everything that any other kid would do with his friends and stuff but he can't go very far from home at all, he's based in the street really because he needs me or my wife with him to help him about.
"He’s really outgoing, he loves making music and he loves computers as they do at that age.
"He loves films, he's really into his drawing, he's always been into films from a young age. Through the Make a Wish Foundation, he made his own film called Dimension Zero.
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"It was like a sci-fi type of thing, he got teleported into another dimension and we went to London for the day to make the film - it was brilliant."
Mike said due to Clark's condition he can't propel his wheelchair very well which means his independence suffers, especially in school and with his friends.
He said they currently have a stairlift in the house, but are also looking to move as they don't have the room to adapt for what Clark will need in the next few years.
This week, the family picked up a power assisted chair at Da Vinci Mobility in Liverpool and are now trying to raise £3,000 for a chair attachment which would give Clark the freedom he needs.
Mike said: "He’s absolutely made up. We picked up his power assisted chair and he was absolutely buzzing when we got there.
"He’s really looking forward to getting this other bit as well."
The group are set to ride in Wirral on September 5 to help raise funds.
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Mark also thanked Da Vinci Mobility who have been "nothing but helpful" in adapting Clark's chair to his specific needs.
To find out more, you can visit Clark's GoFundMe page here.
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