A year ago, my dear friends Lizzie and James, received the devastating news that their 3 year old son, Sebastian, has the rare and life-limiting disease, Duchenne Muscular Dystrophy (DMD), for which there is currently no cure. Click on 'Sebastian's Story' above, to find out more.

Exciting research is taking place into this disease, but because it is so rare, funding to help children like Sebastian is limited. No-one should ever have to receive this kind of life changing news about their child, and so I decided to start fundraising in support of Sebastian, his family, and Action Duchenne.

On 2 Apr 17, I completed the City of Lincoln 10k run, and on 10 Sep 17, I tackled the Great North Run half marathon, as a member of Team Action Duchenne. My next challenge is the London Marathon 2018, where I will be running with a small team of Action Duchenne runners. This will be my first and only marathon, so I must make it count. 

Please help me to raise money for this vital cause, by donating whatever you can, so that Action Duchenne can continue their valuable work into treatments, and maybe even a cure, giving children like Sebastian the chance of a brighter future. Thank you so much for your support.

What is DMD?

DMD is a genetic disorder characterised by progressive muscle degeneration and weakness.

DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between 3 and 5 years of age. The disease primarily affects boys, but in rare cases it can affect girls.

What are the symptoms of DMD?

Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk. The calves are often enlarged. By the early teens, the heart and respiratory muscles are also affected.

What is the life expectancy with DMD?

Until relatively recently, boys with DMD usually did not survive much beyond their teenage years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s.

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