Story
Last year my closest friend Eloise had a baby and in turn I got another best friend. But from the moment Eve was born something was wrong. Eve was born with a painful genetic skin condition which leaves her skin as fragile as butterfly wings. The slightest bump or knock causes blistering, skin loss and painful welts.
Eve was born without skin on her left leg from the knee down and a disfigured foot, but this hasn't stopped her from crawling or trying to take her first steps. This makes every day a challenge as she tries to explore the world around her. The bumps and tumbles that any normal toddler might have cause Eve painful blisters, making even comforting her with a cuddle difficult at times. Blisters also appear without any explanation, from the size of a pea to her whole forearm and can be anywhere on her body, including her face. There is frustratingly little that can be done to stop her pain apart from pad Eve's clothing and tend to her constant wounds and dressings. We have no idea how it will progress apart from watch as she grows. Recessive Dystrophic Epidermolysis Bullosa (RDEB) is incurable.
But the unfortunate reality is that babies with Eve's rare form of EB can have a reduced life expectancy, due to an increased risk of contracting malignant, fatal skin cancers.
Our health is so important and something we all take for granted every day, for ourselves and those we love. In the coming months I'm going to use my health to help my best friend. I'll be pushing myself to complete as many sporting challenges in consecutive months to raise £10k. I start with The Manchester 10k in May, Hackney Half Marathon in June, cycle 350miles in 3 days from London to Paris in July, London Triathlon - Olympic distance - in August, Leeds Olympic Triathlon in September, Amsterdam Marathon in October, the New York Marathon in November, I'm having a rest in December - the others I have yet to plan but I will finish with riding from London to Paris for a second time in June 2015.
By supporting me through what is going to be the toughest summer of my life, you’re supporting my best friend and Eve, who at 1 has no real understanding of how this condition is going to affect her life. None of us do. All we can do is watch. Your support will contribute to genetic research into this cruel and unforgiving condition. At the moment research is still the only hope of a cure into the vital protein cement that Eve is missing. And most importantly your support will mean the world to Eloise and Eve.
Eloise and Bernie, Eve’s parents, have set up ‘Eve's EB Research Fund’ which will go directly into medical research into Recessive Dystrophic Epidermolysis Bullosa. It operates under the Debra UK Charity. Their aim is to raise GBP 100,000 and move us closer to a cure for this awful condition. Help me to help them and my beautiful god-daughter with your support. Thank you!