This May, I’m taking on a 249,000 step challenge to raise as much money as possible for Muscular Dystrophy UK (MDUK), who are doing incredible work funding the Nemaline Myopathy Natural History Study at Oxford University over the next five years.

Nemaline Myopathy is a very rare muscle condition, affecting around 1 in 50,000 births. It impacts skeletal muscles throughout the body and can vary from mild to severe, depending on the specific genetic mutation.

This cause is deeply personal to our family. Our beautiful daughter, Deedee, was born with Nemaline Myopathy and has a mutation on her NEB gene that has never been seen before. That’s why I’ve chosen 249,000 steps—because the NEB gene spans 249 kilobases of genomic sequence.

Deedee’s condition affects all of her muscles. She needs support with breathing, swallowing, coughing, feeding, and all movement. Even something as common as a cold can become life-threatening. She has experienced more medical interventions and procedures in her first 4 years then most people would experience across a lifetime. Despite everything she faces every single day, she is the strongest, most determined little girl—and without a doubt, the bravest person I know.

Every penny raised will go towards this vital Natural History Study. By helping researchers better understand how Nemaline Myopathy progresses over time, this work could play a crucial role in developing future clinical trials, treatments, and therapies.

If you’re able to donate, no matter how small, it would mean the world to us. Your support will help drive research forward and bring hope for a brighter, safer future for Deedee and everyone living with this condition.

Thank you so much for your support 💙