OWAIN Clark doesn’t just contend with the usual angst that goes with being a teenager.
The 13-year-old has to battle with a condition that could see him being internally decapitated.
The condition, known as Ehlers-Danlos syndrome, affects one in 5,000 people and is an incurable genetic disorder that weakens the collagen in the body.
The surgery needed to ease the condition isn’t available on the NHS so he has to manage the best he can.
But it hasn’t stopped him living a full and active life.
Owain is a keen runner and also plays karate at Ulverston Karate Academy, where he has risen to green belt with a stripe after two years at the dojo.
He said: “I didn’t know what to think when I heard I’d been nominated.
“I was surprised. This has been my life since I was aged eight so I’m used to it.
“But I was very happy to have been nominated. We do a lot for each other as a family and we pull together.
“My condition is nowhere near as bad, which allows me to do karate and I like to run.
“I don’t like team sports but I love to keep fit so running is something I enjoy.
“I’m not sure what to expect at the awards ceremony.
“But I think there will be a lot of people I know from just seeing them around. It’ll be nice to go out as a family.”
He and his dad Phil, as former Ulverston Victoria High School pupil, and his siblings Steffan and Rhiannon, all have the condition.
His dad Phil recently underwent life-saving surgery and despite his own health issues Owain acted as a translator as he speaks Spanish.
Phil has dealt with his condition with amazing dignity and was living on a knife-edge of life and death for years.
And that same courage and determination has certainly rubbed off on his children.
Phil said: “Owain is remarkable young man and he deals with so much for someone who is so young.
“As parents, we probably don’t give him the recognition he deserves but he’s an absolute star.
“He makes a lot of sacrifices and does an awful lot that other teenagers don’t do so he deserves all the plaudits in the world.
“He deserves all the credit in the world as for the last six or seven years he’s been an amazing son and we are so proud of him.”
Owain has shown incredible bravery and has helped his family overcome an incredible amount and has done it with courage.
The young man is home-schooled but faces the challenges of his life and his condition with incredible bravery and a maturity beyond his years.
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