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
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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