Mum Leanne and Dad Lee have set up a Family Fund for their daughter, Jess, who was diagnosed with myotonic dystrophy aged eight at the end of 2025.

Jess is a happy, fun-loving little girl who loves swimming, dancing, and being around her friends and family.

Jess was diagnosed with myotonic dystrophy at the end of 2025, after years of knowing in my heart that something wasn’t quite right but never being able to put a name to it. As she grew, we began to notice more signs like, stiffness, difficulties with movement, a weaker grip and tired, sore legs. Looking back, all the little things that never quite made sense suddenly did.

Hearing the diagnosis was devastating. I had heard of muscular dystrophy, but I didn’t understand the different types or what it could mean for Jess. My mind went straight to the future, and I was terrified of what might lie ahead. As her mum, the hardest part is knowing I can’t take this away from her. I would do anything to carry it for her instead. But as a family, we knew we couldn’t let fear take over. We are positive, active people, and we want Jess to keep experiencing all the happiness, love and fun she deserves, one day at a time.

Jess knows she goes to hospital to have her muscles checked, and that sometimes her legs get tired or sore. Day to day, we are learning how to support her in gentle ways, whether that means taking breaks, stopping for a drink, or giving her time to rest when she needs it. By the end of a busy week, she’s completely shattered, and I’m much more aware now of listening to what her body is telling us.

We set up our Family Fund because Muscular Dystrophy UK is now part of our lives, and we want to do everything we can to help Jess and other families facing the unknown. Fundraising gives us a way to turn some of that fear and helplessness into hope. I’ve already taken part in the Kiltwalk, and Jess’s dad is planning to run a half marathon with friends and family next year. Every donation and every bit of support mean the world to us, because it helps fund research, support and a better future for Jess and others affected by muscle wasting conditions.

Fundraising will be split 80/20 between MDUK’s research into myotonic dystrophy and to help support Jess's future welfare needs.