In 2022, Charlie and I received life changing news that two of our three children, Tom now aged 16 and Rosie aged 11 (who you can see at the start and end of the video), have a mutation in the DHDDS gene which causes a rare metabolic disorder.

Children with this condition face complex neurological symptoms including tremors, myoclonus, ataxia, learning difficulties and seizures. For many, the condition is progressive, with symptoms becoming more challenging over time and making everyday life increasingly difficult.

Thanks to the generosity of supporters so far, we have been able to fund several groundbreaking research projects around the world to better understand this ultra rare disease and explore potential treatments, including one that has progressed to a clinical trial involving ten patients at Mount Sinai Hospital.

Like many rare conditions, much of the responsibility for funding research falls on families. We are deeply grateful for every donation that helps move this work forward and brings us closer to a treatment.

In June, I will be joining a group of friends, colleagues and family to take on the National Three Peaks Challenge, climbing the highest mountains in Scotland, England and Wales within 24 hours. The route covers around 23 to 26 miles of hiking and a total ascent of over 3,000 meters. As someone who is scared of heights and prone to travel sickness, this is a particularly daunting challenge.

Every donation will directly support our next step, funding a research project at University College London focused on identifying a biomarker for DHDDS disease. This is a crucial milestone that will help track progression and guide future treatments.

Thank you for helping give our rare warriors hope of a brighter future.