Story
Our 3 year old daughter / neice Isla has the most severe form of a condition called Recessive Dystrophic Epidermolysis Bullosa (EB), a devastating blistering skin disorder.
Like many other children, Isla likes to play and have fun, however, she blisters at the slightest knock and her fragile skin comes away very easily. We even have to be careful when hugging Isla as even this could hurt her. She also gets blisters in her mouth and throat, which makes eating and drinking very painful.
Isla’s blisters need to be constantly lanced and treated to minimise infection, which is an extremely lengthy and painful process. We bath and change her bandages twice a week, but this is extremely distressing for her. The right balance of pain relief is vital and includes morphine and a powerful sedative, which induces amnesia. This also helps Isla not to associate pain with us.
Isla’s feet have never healed and remain constantly bandaged. She finds walking extremely painful.
For more information, please read this article which was published in the Scottish Herald on 3rd May 2012:
http://www.heraldscotland.com/news/health/when-love-hurts.16833691
On 23 June 2012, Rachael (Tilli), Andy and Martin are participating in The Highland Cross, a 50-mile duathlon (20 miles on foot, 30 miles on bike) traversing the spectacular Scottish Highlands coast to coast, west to east from Kintail through Glen Affric and Strathglass to Beauly.
In addition to raising money for DEBRA, the charity that supports Isla and other EB sufferers, we are fundraising for the five principal Highland Cross charities, based across the Highlands:
• The Glenurquhart Care Project
• The Mulitple Sclerosis (MS) Centre
• Special Needs Action Project (SNAP)
These charities are chosen carefully and they benefit hugely from the support they get from the Highland Cross year after year.
Please give whatever you feel you can, however small and help us raise a FANTASTIC amount to these worthwhile causes.
We thank you for your invaluable support and kindness.