Leicestershire teenager takes on swimming challenge for Rainbows
Fourteen-year-old Ryan White, who suffers from a muscle wasting disease, is taking on a swimming challenge to raise money for the hospice that cares for him.
Ryan, of Ashby Parva, was diagnosed with Duchenne Muscular Dystrophy (DMD) - a condition that causes all muscles to weaken over time, when he was six-years-old.
As Ryan grew up, his parents Jayne and Ty knew there was something wrong with their son but they were unprepared for the life-changing scenario that lay ahead. Jayne said: “As a small boy, Ryan just kept falling over and getting really bad bumps and we just needed to get to the bottom of it. When we saw the paediatrician she was almost positive she knew what he had got as soon as she looked at him.
“We were in with the doctors for ages while Ryan had tests so we had a feeling something was very wrong. When we got the call telling us they needed to come and see us at home, we knew it wasn’t good news.”
A further muscle biopsy confirmed the news that Jayne and Ty didn’t want to hear. “When we first found out that Ryan had Duchenne Muscular Dystrophy, we still didn’t really know what it was,” said Jayne. “As we started to find out more and more, it was like we were in a lift and we were getting out at different stages.
“We were originally told that Ryan wouldn’t live past the age of 20, but that has changed now with medical advances and we don’t know what his prognosis will be. We think as time goes on, it does get easier as you just don’t have a choice; you learn to cope with it. It used to be really hard at night when I saw him sleeping in his bed. I used to cry every night and I just thought ‘why?’.”
Ryan, a pupil at Ashfield School in Leicester, is confined to a wheel chair and has to have regular physiotherapy to ease the pain and stiffness in his lower limbs. He is also starting to lose the strength in his arms.
But he never gives up and on Friday 29 November, Ryan is joining others in our hydrotherapy pool as part of a 24 hour Swimathon - which is being held in memory of Susan Taylor, who tragically died while swimming the English Channel earlier this year.
Ryan’s love of swimming began when he was four-years-old. Jayne said: “We always said that Ryan and his brother, Aaron (17), could do any activity they wanted and Ryan just loved to swim. He still loves to swim now, even though it has got harder for him, he will always do 20 lengths of a pool, no matter how long it takes him.
“It is brilliant that he is taking part in the Swimathon. Rainbows has been a fantastic place for us and for Ryan. Ryan just loves Rainbows. He really enjoys going and has friends there who are in the same position as he is. He thinks the world of Rainbows and everyone there.
“No matter what Ryan does, he always gives 100 percent. He never wants to let anyone down. I think the fact that he is disabled himself, but wants to raise money for Rainbows to help other children is amazing.”
Ryan also raises funds for us by selling paintings he creates. His love for art developed when he was a toddler and he did his first painting of the sky and some sheep. His art touched people’s hearts and demand grew. Soon Ryan was producing paintings for family members and friends.
“I always call Ryan my little rollercoaster as he just trundles along,” added Jayne. “Ryan is such a fighter. He is so determined and very thoughtful towards others. He always says that he hopes they find a cure for DMD. He says he knows it is too late for him but he hopes they can do it for other people.”
The 24 hour swimathon is part of Make a Splash, organised by GEM 106 to bring the East Midlands together in memory of Susan.