Last year we welcomed Eve into world, the smiling wriggling little 1 year old little girl you see here. 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 - 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.

 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, eyes and throat.

 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.

Eve, at just 1 years old, has no real understanding of how this condition is going to affect her life. None of us do. All we can do is watch.

The hope for EB sufferers like Eve lies in medical research. Recently, there have been some major breakthroughs in research. This give us, and all other families touched by EB, an urgency in pushing ahead with further research into this cruel condition.

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 (collagen 7) that Eve is missing.

‘Eve’s EB Research Fund’ was set up and is run by us, Eve's parents, operating under the Debra UK Charity umbrella. We have set a goal of GBP 100,000 to take us closer to a cure for this awful condition.

Please help us in our goal.

Thank you from the bottom of hearts,

Eloise and Bernie (Eve's parents) and baby Eve.

More on Recessive Dystrophic EB:

Blistering onset is at birth or soon afterwards. In some cases, nearly all skin surfaces and mucous membranes (from mouth to anus) are covered by blisters. Large areas may be devoid of skin. There is widespread scarring and deformity. Fingers and toes may become immobile. With recurrent scarring, fingers and/or toes may fuse together. Hands and arms may become fixed in a flexed position with resulting contractures. There is usually loss of the nails of the fingers and toes. Teeth may be malformed and delayed in appearing through the gums. Because routine dental care can raise blisters, many persons with RDEB have a higher than normal incidence of cavities. Blistering on the mucosal surfaces often cause scarring within the mouth and gastrointestinal tract. The ingestion of food may be limited due to microstomia (inability to fully open mouth due to scarring and contractures of the perioral region), painful swallowing, difficulty chewing, (due to poor dentition) esophageal webbing. In many cases chronic malnutrition, growth retardation and anemia may ensue. Involvement of the eyes can include eyelid inflammation with adhesions to the eyeball, as well as inflammation of the cornea or the conjunctiva (the mucous membrane covering the eyeball and the underside of the lids).

- See more at: http://www.debra.org/dystrophic#dystrophicrecessive