A gift of hope for the future
Ten-year-old Jack has a rare disease, Duchenne Muscular Dystrophy. Jack’s mum, Claire Sowden, and his physiotherapist, Lindsey Pallant, explain how you can help
Claire’s son, Jack, was diagnosed with Duchenne Muscular Dystrophy when he was four. The team at Leeds are doing everything they can, but there’s no cure for Duchenne yet.
Claire explained that she and Jack regularly make the three-hour round trip from their home in York to the Research Centre in Leeds because Jack is involved in trialling new drugs — and the trials are the only hope they have.
Jack is only 10 but he knows he is going to die. Jack has told his parents that he wants to take part in as many drug trials as he can. When
Claire asked Jack why he wanted to take part in trials he explained, “Because I want to help other little boys like me.”
The research that takes place in Leeds is the only way doctors will ever be able to help Jack and other children like him. Every day Claire and her husband wait to hear some good news from the research centre. Until then they are just taking it one day at a time. “Jack’s life will be short. Unless we find a cure,” Claire says.
Jack sees his physiotherapist Lindsey regularly. Lindsey explained that when she first started working as a physio, many boys with Duchenne Muscular Dystrophy died in their teenage years.
Twenty years on, care has improved, but many still won’t make it past their 25th birthday. There’s still no cure. Lindsey added, “It’s heartbreaking to look in a parent’s eyes and tell them there’s no cure for their little boy.”
One glimmer of hope for parents is clinical trials. Lindsey would love to be able sit across from an anxious mother like Claire and see the relief on her face when she tells her they have the medicines that can change everything, that they can save her son.
That’s why a gift left in a Will to Leeds Hospitals Charity is so important. Gifts of all sizes can provide vital funding for research trials that can help discover better treatments, better care and ultimately cures.
“Jack’s life will be short. Unless we find a cure.”