A year ago my beautiful daughter Maha was born with a rare genetic skin disorder called Epidermolysis Bullosa (EB). This is a condition characterised by skin fragility causing the skin to blister and shear at the slightest friction, or even spontaneously. There are at least 5,000 people living with EB in the UK with approximately one in 17,000 births affected by it.

Fifty percent of children born with Juctional EB, like Maha, are not expected to survive their second or third year of life. This is a devastating condition for which there is no cure and no effective treatment.

Everyday seems to present Maha a new challenge; one she meets head on without complaining and without letting it dampen her enthusiasm for having fun. So, I’ve set myself the challenge of running the Virgin London Marathon in 2014. I’ll try and do it, like Maha, without complaining – not about the cold, early morning runs and not about my tired old knees and I’ll also try and enjoy it along the way.

I’ll be running for DEBRA who are the national charity that support individuals and families affected by EB. They work in three areas:

1) Funding research to find effective treatments and ultimately, a cure for EB.
2) Providing an enhanced specialist EB Nursing Service, in partnership with the NHS. A service which has been of tremendous support to us at Great Ormond Street Hospital.
3) Providing community support to help people live with dignity.

My target is high and it’s a tough climate out there but I’d appreciate whatever, if anything, however little you can give.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.