Thank you for visiting my fundraising page.

I am proud to be running my first marathon as a tribute to gorgeous little Max, born to my friends, Matt and Aliza, with EB- a rare genetic condition which causes the skin to blister and shear at the slightest friction, even spontaneously.

EB has a number of distinct forms; at its mildest, blistering is confined to the hands and feet. In more severe cases, the whole body is affected and wounds heal very slowly, giving rise to scarring, physical deformity and significant disability. Blistering can also affect inner body linings, such as the mouth and oesophagus and, in its most advanced form, EB can be fatal in infancy.

Max’s skin was as fragile as a butterfly wing. His body, arms, legs and feet were constantly covered in blisters as a result of his condition which rarely healed. Blisters often occurred in his mouth and oesophagus, sometimes in and around his eyes. Matt and Aliza had to administer a combination of medicines every day to reduce Max’s pain and his bandages were changed constantly to ensure his blister wounds did not become infected.

Specialist nurses funded by DebRa supported Matt and Aliza from the beginning of Max’s life. When not with the family they were available day and night by telephone to provide support and guidance. Max benefited enormously from the incredible team effort.

On 1st March 2007, Max died peacefully in his mothers arms, aged just 7 months old.

For children living with EB, every day starts with hours of agonising pain. They sleep almost totally bandaged to protect their skin – the proteins that normally hold the skin together just do not function. Every morning skin blisters need to be lanced and dressed – a painful procedure  taking up to 3 hours.

DebRa is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB). There are at least 5000 people living with this devastating condition in the UK. The charity was founded in 1978 and provides an expert team of nurses and social care staff to work direct with families affected by EB.The charity also commissions world-leading research into the condition with the aim of finding effective treatments and, ultimately, a cure for EB.

Because DebRa receives no government funding, it relies wholly on the generosity of the public to carry out its vital work, improving life and giving hope..

To deal with EB we have to deal with the genetic spelling mistakes that cause EB. That is now becoming possible.

For Matt and Aliza, the pain of their loss will live with them forever. But they live in hope for the future. And that is where you and I come in.

To give you an idea of what your donation could provide:

£2.50 will buy a pair of scratch mitts to prevent a baby born with EB from tearing their own skin.

£5 will buy a set of easy grip chunky pens to help children holding  a pen when their fingers are fused together from repeated scarring.

£25 buys an hour of research to bring us closer to finding an effective treatment fpr EB.

£50 provides accommodation for one parent of a child in hospital.

£3000 will buy a special cot for an EB child at home.

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 UK taxpayer, an extra 28% in tax will be added to your gift by HM Excise & Customs - and at no extra cost to you.

Please sponsor me now!and help to make a real difference for young children suffering from EB by providing them with specialist nursing an providing funds for extensive medical research, councelling, welfare, respite and advocacy.

Many thanks for your support.

Jo xxx