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Monique's page

Monique Busby is raising money for DEBRA

Participants: Monique Busby

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Scarlett's Yorkshire Three Peaks Challenge 26-27th May 2012 · 26 May 2012

DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal. We fund pioneering research and provide care and support to individuals and families living with EB.

Story

<p>Thanks for taking the time to visit my JustGiving page.</p> <p>I, together with 9 other friends, have decided to walk the Yorkshire Three Peaks, a tough walk of 26 miles, to raise money for DEBRA, a fantastic charity. There is a special reason why we want to raise funds for this specific charity.</p> <p>In 2011 our friends had a little girl, Scarlett. After a normal pregnancy, Scarlett was born with severe wounds to her arms and legs. She was instantly whisked away to intensive care and a very worrying time began as doctors tried to work out what was wrong with her. Finally it was established that she has the rare skin condition EB, or Epidermolysis Bullosa.</p> <p>Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.</p> <p>EB is likely to affect 1 in 17,000 live births and it is estimated that there are currently 5,000 people with the condition in the UK. Because EB is an inherited condition (it cannot be caught), which is passed on genetically from parents to children, first time parents often do not know that they are carriers and will have no prior warning that the child will be affected, until birth.</p> <p>The condition has a number of distinct forms. At its mildest, the blistering is confined to the hands and feet making holding things and walking extremely painful. In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.</p> <p>For many affected by the condition, the blistering is not limited to the skin but also affects the inner body linings such as the mouth and oesophagus. The eating of solids is, in these cases, almost impossible, and the disposal of the body waste incredibly painful. When this condition applies, malnutrition is often a consequence, further reducing the body's resistance to infection.</p> <p>People with the more severe types of EB also have an exceptionally high risk of developing skin cancers, shortening their lives by approximately 30-40 years. In its most severe form, the condition is fatal in infancy.</p> <p>Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.</p> <p>As you can imagine, it is vital for the charity to raise funds to do more research in finding a cure for this horrible illness.</p> <p>Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving &ndash; they&rsquo;ll never sell them on or send unwanted emails. Once you donate, they&rsquo;ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it&rsquo;s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.</p> <p>So please dig deep and donate now.</p>

Donation summary

Total
£396.00
+ £27.50 Gift Aid
Online
£155.00
Offline
£241.00

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