Join Arshad and run for DebRA at the 2008 Flora London Marathon
Woking father Arshad Mahmood is urging runners with public ballot places at this year’s Flora London Marathon to support DebRA - a charity that’s very close to his heart.
DebRA supports families affected by Epidermolysis Bullosa (EB) - a rare genetic condition which causes the skin to blister and shear at the slightest friction and can be fatal in infancy. There are at least 5,000 people living with this devastating condition in the UK and 500,000 worldwide.
Arshad lost his son to EB in March 1999 and has already taken part in two marathons this year – the Tokyo Marathon (in February) and Reading Half Marathon (in March) - to raise funds for DebRA. He is currently in training to undertake the Flora London Marathon on 13th April
The local father of two says: “DebRA helped me and supported my family when we most needed help. I hadn’t heard of EB until my son, Mustapha, was born with the condition. My wife and I were expecting a perfectly normal healthy child. On what should have been the happiest day of our lives, our world was shattered wiithin minutes when we saw Mustapha born with sore hands and feet - they were covered with blisters.
“Then we were given the devastating news by the senior EB nurse consultant that our son was born with EB. My wife and I were, unknowingly, healthy carriers of the EB gene. We didn’t think things could get any worse but the biopsy results revealed that Mustapha had the rarest and most severe type – Junctional EB - which meant it would take his life in early infancy.
“Being told that you will lose your child or that the quality of his life is going to be really poor and that you are unlikely to see him reach his 1st birthday is heartbreaking. As is watching him live every day of his short life in pain and watching helplessly as EB takes over your precious baby’s body. My son died after one month of pain and agony.
“Without the support of DebRA and the DebRA children’s nursing service, we are not sure how we would have coped. DebRA was truly amazing and helped us come to terms with Mustapha’s condition. Without DebRA, Mustapha would have had no quality during his short life.”
Andrew Colville, Senior Events Manager at DebRA, said: “The charity relies on fundraising events like the Flora London Marathon to carry out its vital work, improving lives and giving hope to families affected by this devastating skin condition.
“We welcome first time and experienced marathon runners to run for DebRA and provide the best possible support to our runners. We also offer excellent facilities for runners and supporters on the day. Last year our supporters raised over £80,000 for DebRA at the Flora London Marathon - help make 2008 another fantastic marathon year for DebRA and help make a difference to the individuals and families affected by EB.”
For more information, please contact Andrew Colville on 01344 771961 or email: andrew.colville@debra.org.uk. For more information on DebRA, please visit www.debra.org.uk. If you would like to sponsor Arshad, please visit www.justgiving.com/arshad.
