In December 2022, our 6 year old son Oscar was diagnosed with Duchenne muscular dystrophy (DMD). This is a rare genetic disorder which progressively causes all the muscles in the body to deteriorate and waste away. We’re in the early stages of this journey.

Children with DMD often have mild behavioural problems associated with the disorder which can affect learning and development. It was for this reason we found ourselves being referred to our local Child Development Centre. It was this team that first spotted Oscar had the signs of this disorder and following blood tests, a hospital referral to the specialists at Evelina Children's Hospital London, and a tense wait, it was confirmed on December 1 2022 that Oscar did indeed have DMD.

The first few weeks after were really difficult as we both struggled to come to terms with the diagnosis. We had our first appointment at the Evelina with the specialists in this field which was eye opening and very informative; we could not praise the staff enough for their empathy, knowledge and ongoing support. Following a recommendation from the Evelina, Oscar started steroid treatment just before Christmas. Although not a cure, steroids help in several ways; by slowing down progression of the condition, preventing inflammation of the muscles to reduce wear and tear; they also help strengthen the muscles. They essentially buy us time but do come with some significant side effects related to long term use.

As you can imagine this has proven quite challenging for Lucy and I to deal with and accept. Breaking the news to family, friends and colleagues has been equally painful.

Whilst Oscar can’t run as fast as his peers, struggles a little with the stairs and finds school challenging from an academic perspective our son is a determined, happy, caring and fun loving little boy, who likes nothing more than a ride on a steam train or an outdoor adventure!

Thankfully, due to the work of Duchenne UK there is a considerable amount of work going into supporting clinical research for improved treatments and in time a cure, they also offer invaluable support and advice for families living with DMD. Most of this work is funded through charitable donations. As we’ve discovered charities such as Duchenne UK have been pivotal in getting funding for trials to take place in the UK. This means treatments and medications can be approved and brought into clinical use much quicker. Although we are in the early stages, there is a real belief that a cure will be available within Oscar’s lifetime.

We plan to take part in various challenges to raise money for Duchenne UK to continue their fantastic work and although it’s a difficult thing to ask for, any donations would be truly appreciated in helping to slow and perhaps one day put a stop this horrific and devastating condition. 

Thank you for all your support

Ian, Lucy & Oscar xx