My story

Update: 11 Oct 08. Thanks everyone, you're amazing, words are hard to find. The marathon went really well (for a bloke who had not trained properly for 26 miles of up and down hill - beautiful scenery though) and I got round in 4hrs 10mins. I am now formulating a plan for a bigger challenge for next year, that involves not just running. Thanks again to you all on behalf of Isla, all EB sufferers and DebRA. Andy

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On 2 July 2008, our second child, Isla was born without any skin on her hands and feet and has since been diagnosed with Severe Recessive Dystrophic Epidermolysis Bullosa RDEB (Hallapeau-Siemens).

Epidermolysis Bullosa is a genetic condition where the skin breaks at the slightest touch, causing blistering and painful open wounds. These blisters have to be lanced, otherwise they will spread and cause infection. The lancing is extremely painful and children often have to take morphine in order to endure this twice-daily procedure. With severe EB constant blistering creates scar tissue, which causes disability and deformity. Fingers and toes fuse together and people with EB have regular operations to open their hands out. For many sufferers the blistering is not limited to the outer body surfaces, but also affects the inner body linings, such as the mouth and oesophagus. When this happens, people with EB will, at regular intervals, have surgery to widen their oesophagus, which has narrowed through scar tissue build-up. The eating of solids is sometimes almost impossible; in the past when this has happened, malnutrition has often been a consequence. People with the more severe type of EB also have a significantly high risk of developing a fatal skin cancer.

I have decided to run my next marathon, at Loch Ness on 5 October 2008, to raise funds for DebRA.

DebRA is the only support group and medical charity in the UK that provides specialist nursing and welfare for children and adults living with this painful condition. DebRA leads the world in research projects likely to lead to a cure and successful treatment for the condition. DebRA also funds wide ranging international research projects, including EB research in genetics, cancer in EB, wound healing and pain management. People affected by EB rely very heavily on DebRA funded research to provide a long-term answer to the illness.

To the left is a link to a DebRA video on YouTube which provides a short insight into EB. If you want to know further information about Isla's specific condition we would be delighted to hear from you and if you would like any further information on EB in general the best source is www.DebRA.org.uk.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to support DebRA. DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Further pictures of our lovely Isla are below the video on the left of this page.

Thank you for reading this.

Andy & Rachael

My gallery 2

My Teams

My company

My charity

DEBRA

DEBRA

Charity Registration No. 1084958

DEBRA helps families affected by EB (Epidermolysis Bullosa), a genetic condition which causes the skin to blister and shear at the slightest friction. DEBRA provides a team of nurses and social care staff to work with families affected by EB and commissions world-leading research into the condition.

Donations 53

Well done Andy. All the best to you, Isla and the family.

Donation by Sarah and Rob Preston on 21/10/08

£50.00

+ £14.10 Gift Aid

Best wishes, Rob

Donation by Rob Fulton on 21/10/08

£25.00

Love, Anne

Donation by Anne Fulton on 21/10/08

£25.00

From Alan Hall, Trudy Johns, Helen Signy, Wendy Winstanly, Peggy Taylor, Jo Clark, Magy Morley, Julia Glennon, Judith Edwards, Jo Bezants, Margr Black

Donation by Mum's Sponsorship Form on 17/10/08

£90.00

Tony, thanks again mate, not anywhere near your standard. Andy

Donation by Tony Pritchard on 12/10/08

£10.00

Terrific

Donation by 'Uncle' Jack on 12/10/08

£20.00

Donation by Mary Searle on 11/10/08

£20.00

Best of luck, love Peggy

Donation by Peggy Grist on 11/10/08

£5.00

Donation by Bob and Jill Tilford on 11/10/08

£50.00

Well done! Lots of love to you all, see you soon x

Donation by Sarah and Keeno on 09/10/08

£50.00

+ £14.10 Gift Aid

Well done Andy, an impressive race. All our love.

Donation by Georgina and Colin on 08/10/08

£50.00

+ £14.10 Gift Aid

Well done Andy - you're a star! Lots of love to you, Tilli, and the girls x

Donation by Sandra and Mike McGrath on 08/10/08

£50.00

+ £14.10 Gift Aid

Hope all went well yesterday and best wishes to you and your family.

Donation by Alun Davies on 06/10/08

£20.00

+ £5.64 Gift Aid

All the best to you and your family

Donation by Maggie Ayers on 05/10/08

£100.00

+ £28.21 Gift Aid

We shall be thinking of you Andy. Run hard and the best of luck.lots of loveJohn and Sue

Donation by John and Sue Lewis on 03/10/08

£50.00

+ £14.10 Gift Aid

Our thoughts are with you and your family. Best of luck with the run, next step Ironman!!

Donation by Mike & Kay Scott on 01/10/08

£50.00

+ £14.10 Gift Aid

Best wishes for the run and we hope all is progressing well with the new posting

Donation by Malcolm and Pat Sutton on 01/10/08

£100.00

Best of luck Andy, Hope to see you all again very soon. Lots of love, Nic xxx

Donation by Nicky O'Hara on 29/09/08

£30.00

+ £8.46 Gift Aid

Andy. This money was collected as a parting gift for Ian Jones. Ian has requested that it be donated to your very worthwhile cause. Bob Taylor.

Donation by Ian Jones on 25/09/08

£61.00

+ £17.21 Gift Aid

Run like the wind Andyman! Hope the move goes/is going well and the family are all settling in. See you soon we really hope! xxx Finn + John

Donation by Finola and John Colvin on 25/09/08

£50.00

Best of luck Andy. I still doubt that 3 chocolate bars a day constitutes as Carbing Up!!!

Donation by Ben Murphy on 23/09/08

£30.00

+ £8.46 Gift Aid

Good luck for the run and best wishes for the family

Donation by Dave Kirton on 23/09/08

£5.00

+ £1.41 Gift Aid

Good luck Andy! Lots of love to the family.

Donation by Laura Harrison on 23/09/08

£20.00

+ £5.64 Gift Aid

Thinking about you all.

Donation by Manda, Guy and Immy on 23/09/08

£30.00

+ £8.46 Gift Aid

Go for it Andy! All our love - Nick Lissy and Sophie x

Donation by Nick, Lissy and Sophie on 22/09/08

£50.00

+ £14.10 Gift Aid

Donation summary

  • * Online donations£2,171.00
  • Offline donations£50.00
  • Text donations£0.00
  • Total raised£2,221.00
  • Gift Aid£500.92

* Charities pay a small fee for our service. Find out how much it is and what we do for it.