On the 18 July 2017 we received the heartbreaking news that both of our sons, Owen (then 3 years old) and George (9 months), have Duchenne muscular dystrophy.
Kirsty had raised concerns more than a year previously, when Owen hadn’t walked until he was 21 months old. However, having been assessed by a physiotherapist and discharged, we were reassured. As the months passed, it became clear that there was a big difference between Owen and his peers with regards to running, jumping, and climbing, and we asked to be referred back to physiotherapy. It was then that Owen was referred to a Paediatrician and blood tests were arranged which confirmed that he had Duchenne muscular dystrophy. At the first appointment with the Neurologist, a simple blood test then confirmed that his younger brother George was also affected.
We are devastated that both of our gorgeous boys have this terrible disease, and it is sometimes hard to believe that our beautiful, happy, funny, naughty little men have been given such a rough start to their lives. However, we are inspired by the words of Desmond Tutu: “hope is being able to see that there is light despite all of the darkness”. Even as recently as ten years ago the future was utterly bleak for boys like Owen and George. However, with the rapid advances in medical science and breakthroughs in gene therapy, for the first time there is real hope of finally finding a cure for Duchenne.
We are determined to make a difference for our sons and all families affected by Duchenne. We launched Project GO with the aims of raising awareness and vital funds to support research into a cure. With the generosity of so many of our friends and family we have raised over £60,000 in under 9 months, which is just the beginning. We are delighted to join Duchenne UK as a Family Fund and we are particularly passionate about supporting the development of the DMD Hub to expand clinical trial capacity for boys throughout the UK.