Jason and Emily’s ten-year-old son Tayler has Emery-Dreifuss muscular dystrophy. They set up Tayler’s Change to raise awareness and funds for Muscular Dystrophy UK.
Tayler has Emery-Dreifuss muscular dystrophy, a condition that, like other muscle-wasting conditions, causes his muscles to slowly and progressively weaken and waste away. It affects his arms and lower legs so he finds writing and drawing incredibly difficult, and he tends to trip over and wobble when he’s walking. It also carries the threat of him having a weakened heart and a shortened life expectancy.
For Tayler having Emery-Dreifuss muscular dystrophy means not being able to walk to school or run around the playground, but means he is not able to do the one thing that he’d really love to, and that’s ride a bike by himself.Sadly, there are no effective treatments for Tayler’s condition and there is no way of preventing it from gradually getting worse as he gets older. Yet despite the enormous challenges ahead, Tayler is an amazingly brave young man with one very determined ambition – to help find a treatment and maybe even one day a cure for muscle-wasting conditions.
Tayler has started saving every penny he can get his hands on in a jar he has labelled Tayler’s Change, to help fund research into his condition.
Tayler’s mum, Emily, said:
The idea of finding new treatments or a cure weighs heavy on Tayler’s mind at the moment. But he genuinely feels like he’s ‘doing his bit’ by saving his birthday and pocket money to help some of the world’s best scientists and researchers find the answers they’re looking for.
Photographer Emily has been attending local Muscle Group meetings and has written for our Campaigns blog. The family are organising a fundraising cycling event in Weston Super-Mare in September, and Jason has bought a tandem bike so Tayler can take join in too.
Setting up a family fund like Tayler’s Change is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.