Here is how you can help a seven-year-old boy from Ashton with a muscular gene disorder raise £11,000 for a hydrotherapy room
The family of a young boy with a muscular gene disorder are hoping to raise £11,000 for a hydrotherapy room which will help improve his strength.
Seven-year-old Keaton Seed, of Ashton, was born with bilateral talipes (clubfoot), meaning his feet bent into his shins. As he was unable to build up his muscular strength, doctors discovered he has a muscular gene disorder which affects his lower limbs and learning.His parents, Paul Seed and Danielle Guest discovered swimming helped him and they set up a hot tub in their garden. But as this is no longer viable, they are now looking to install a hydrotherapy room in their home.Danielle, 31, says: “Keaton was born with bilateral talipes, where his feet were bending and touching his shins. His legs were in a cast from the age of two weeks until he was two years old. He kept getting infections as he was allergic to the plastic. He was in and out of casts for two years and so was quite weak. He could sit up but not crawl. “When the cast was off we became concerned so he had an MRI and biopsy which showed a slow and a fast twitch on his legs. “He was sent to Great Ormond Street Hospital and doctors realised there was something wrong with his gene, which affects 100 children in the world. Doctors are 90 per cent sure of what the condition is, but we have to wait a few more months for a confirmed diagnosis.“There are different mutations and it seems he has a bit of both in that it affects his lower limbs and he has a learning disability.
“He can’t walk and has to rely on a wheelchair and special standing equipment.” Danielle admits Keaton finds it hard to keep up with his friends at St Anthony’s Primary School.She says: “Life is hard for Keaton. He is so happy but he knows something is wrong. He struggles with work at school and has to have one-on-one support. He knows other children can run around and he can’t.“Two years ago, we bought a hot tub so he could swim outside at home to build up his strength, as doctors say his condition will worsen over the years. “But we don’t have the weather to do that all the time so we want to build a hydrotherapy room. He can’t go to a normal pool as it is too cold for him and it would hurt his muscles.“Our garden is on a slant, so we need a flat surface and we have to sort the electrics and plumbing, so it is a big job.”To help with funding, Danielle’s old school friend Rachel Moore, is running along the new Penwortham Bypass with her two sons, Thomas, 11, and Alfie, seven, on July 21.The Hurt Plant Hire Penwortham Bypass Running Festival allows people the chance to run along the new section before it opens.Danielle says: “It means so much to us that people are helping us fund-raise. We don’t like asking for money.“We have raised money before for Keaton’s equipment. Three years ago we cycled the Guild Wheel to raise funds for a special trike for Keaton and a year later, it got stolen, so a friend set up a fund-raiser page for that, which was nice.”Rachel, of Fulwood, says: “I like doing fund raisers, as I normally do things for Ronald McDonald House. But this time I wanted to do something a bit closer to home. “Then I saw on Facebook, Danielle was trying to raise money for her son.“So I grabbed the opportunity and decided to run 10K. I wanted my boys to see what a difference we can make to people lives by pulling together and helping people in need. “The thought of him being able to get his hydrotherapy room because they have helped out has made them feel really proud and good about themselves.”
To help raise funds for his equipment you can visit Keaton’s Hydrotherapy Room on Facebook at www.facebook.com/donate/860049201008331/