Andy runs Loch Ness Marathon for DebRA
Event: Baxters Loch Ness Marathon 2008 on 05/10/2008
Team Members: Andy Grist
$3,386.32 raised of $3,049.36 target
$3,386.32 raised so far
How to make a donation
Donate online at - www.justgiving.com/islagrist
By mobile internet Scan this code on your smartphone to go straight to Rachael Grist's page.
By text message to donate £10 Text £10
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
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.
Best wishes to all the family and good luck on the run. Will double it if you beat 3.47.
Donation by Phil Beazer on 01/09/08
+ £4.23 Gift Aid
Best of luck Andy, rather you than me!
Donation by Martin Tilford on 25/08/08
+ £14.10 Gift Aid
We wish you all the very best of luck in these difficult times, and are with you every step of the way
Donation by Fiona and Mike Grist on 10/08/08
+ £141.03 Gift Aid
- * Online donations$3,310.08
- Offline donations$76.23
- Text donations$0.00
- Total raised$3,386.32
- Gift Aid$763.75
* Charities pay a small fee for our service. Find out how much it is and what we do for it.