Dan’s Hope is a family fund set up by James and Debra McLellan for their son, Dan, who has Ullrich congenital muscular dystrophy.
Debra and James have thrown themselves into fundraising, originally setting themselves the challenge of raising £15,000 to fund a new Clinical Trials Co-ordinator, to be based at the Institute of Child Health at Great Ormond Street Hospital.
Ullrich congenital muscular dystrophy is a condition that causes Dan’s muscles to weaken and waste, and causes progressive stiffness of the muscles and spine. The condition makes it increasingly difficult to walk and many children develop respiratory problems as the muscles in their chests weaken. While Dan can walk, he cannot run or jump and he struggles to get up from a seated position.
Debra McLellan said,
As a parent, the one thing you want for your child is to know that they will have a happy healthy and long life. Ullrich congenital muscular dystrophy affects less than one in a million children and it was a huge shock to us when Dan was diagnosed. It is a progressive condition which means that Dan has very weak muscles. At the moment he can walk short distances but falls often, and unless we find a cure, he will never jump or run and he will need help with breathing as the disease starts to affect his lungs.
It is heartbreaking to see him watch his older brother and little friends running and jumping, but Dan always has a cheeky smile and is such great fun. We feel blessed to be his mum and dad.
There is no cure today but there is hope which is why we set up the Dan’s Hope charity in support of Muscular Dystrophy UK. All funds raised will go to support a trial to test a new drug which we hope will give Dan the chance of walking for many years and of thriving in to adulthood. We have raised over £10,000 since June 2012, through quizzes and golf days and the generosity of our friends.
Debra’s brother Paul and his wife Angela, have themselves pledged to raise over half a million pounds for Muscular Dystrophy UK in honour of their nephew Dan. £500,000 is needed in the coming years to fund research into congenital muscular dystrophy. The pair are seasoned charity fundraisers, having raised more than £35k for charity before.
When my sister first told me about Dan’s condition I just couldn’t take it all in. He’s such a lovely, happy, normal little boy that it doesn’t seem to be true – knowing what his future may hold and that one day he may not be able to walk is just heartbreaking.
How you can help
Setting up a family fund like Dan’s Hope is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.