Two and a half marathons in two months for DebRA
Hi everyone,
You may recall that I ran the London Marathon earlier this year for DebRA, the national charity working on behalf of individuals and families affected by Epidermolysis Bullosa (EB) – a rare genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously.
With your help, I raised in excess of £5,000, which helped DebRA raise over £70,000 at this event.
Once again, I am asking you to dig deep into your pockets as I dig deep in to my energy levels - by taking part in two full marathons - in two continents - plus a half marathon in two months. Yes, two full marathons!!
I will take on the Tokyo Marathon on 17 February, followed by the Reading Half Marathon on 2 March and then the Flora London Marathon on 13 April to raise vital funds for DebRA. All funds will go to Debra as all expenses will personally be met by me,
For those who are unfamiliar with my story and would like to know why I’m supporting DebRA, this charity 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.
Because there is no government funding, DebRA provides the only specialist support available to families affected by EB. An estimated 1 out of every 50,000 live births are affected with some type of EB. The condition occurs in every racial and ethnic group throughout the world and affects both sexes equally.
Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me; DebRA will receive your money faster and, if you are a taxpayer, an extra 28% in tax will be added to your gift at no cost to you.
£5 will fund 15 minutes of vital research
£20 will bring hope of effective treatment one hour closer
£75 will provide an E.B. care specialist for one day
£150 funds a researcher bringing the REALITY of a cure one day nearer
So I urge you to dig deep and sponsor me - together, we can help make a difference to the 5,000 individuals and families living with EB in the UK.
For more information and to view a short video clip showing the reality of living with EB, please visit www.debra.org.uk.
Many thanks for your continued support.
