Edward was born in October 2015 and lives in Ripon, North Yorkshire. His mum is called Rachel and his dad is called David. He is a happy, loveable son who loves an adventure, whether that be a walk down the river, playing in the park or visiting the Railway museum in York. He loves trains and our house is full of train sets! He could watch a model railway for hours!
Edward was diagnosed in May 2018 (at 2 ½) with Duchenne Muscular Dystrophy (DMD). Discovering he had DMD was one of the most horrific moments for myself, as well as the rest of his family! The year following the diagnosis was one of the hardest and darkest of my life. However, meeting parents of fellow children with Duchenne and talking to charities was a massive help! Life is not over. It has just taken a different path than initially expected. There have still been many happy times and I am positive there will be many more to come! You learn to live every day to the full!
Currently there is no cure for DMD. Steroids are available and there are several trials ongoing for new drugs. Edward is currently taking part in a Vamorolone trial, developed by ReveraGen BioPharma. In simple terms it is a form of steroid that is meant to have reduced side effects in comparison to a standard steroid. Much more is needed to help find a cure.
Edward will also require a wheelchair in a couple of years, as well as other medical support. House adaptations will also need to be made in time.
Any help for boys with DMD and supporting Edward on his journey, giving him the best life possible, would be greatly appreciated! I have many running events planned, with maybe the odd quiz along the way, plus much more. Keep an eye out for up and coming events!
Please consider donating to our family fund at any time, or maybe get in touch to help me organise an event!
Duchenne UK, who are a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne Muscular Dystrophy (DMD), and to do so in a decade.