Dan and Jess Sheppard have set up a family fund to support research and help for families affected by myotonic dystrophy, after their youngest daughter, Daisy, was diagnosed with the condition and genetic testing later showed that Gabriella and Jess are also affected.
Stronger with the Sheppards
In June 2025, we welcomed our beautiful Daisy into the world. Everything seemed fine for the first 30 minutes, but during her initial checks, Daisy suddenly stopped breathing. She spent three weeks in NICU, where she needed support to breathe and an NG tube to feed because feeding left her exhausted. The doctors were trying to understand why she was such a ‘floppy’ baby, and genetic testing later showed that she had congenital myotonic dystrophy. In the weeks that followed, Daisy gradually grew stronger, began breathing for herself, and we were finally able to bring her home. After four months of hard work with dieticians and the speech and language team, she had her NG tube removed and began to grow well.
Over the next few months, our family was tested for the condition, and we found out that Gabriella and Jess also have myotonic dystrophy. It was difficult news to take in, and it took time to understand what it meant for our family, but it also helped explain things we had lived with for years, including the tiredness Jess had always thought was just part of being a mum. Myotonic dystrophy can affect everyday life in different ways, from muscle weakness and fatigue to breathing, feeding and development, which means Daisy, Gabriella and Jess will all need ongoing support as we grow and adapt.
Our goal
We attended a Muscular Dystrophy UK information day and learnt so much about the different conditions, while hearing from inspiring people living with muscle wasting conditions. In early 2026, Dan ran the marathon for Muscular Dystrophy UK, and we also organised a charity raffle in our local community to raise awareness and help fund research into myotonic dystrophy.
As a family, we have decided to set up a family fund to support research into myotonic dystrophy and help improve quality of life for people living with the condition. We know there is a long road ahead, but we want to give our girls the best support possible and contribute to work that could lead to better treatments, better care and one day, a cure. We’d love it if you could support our family fund and share our story to help raise vital awareness around myotonic dystrophy.
