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Epidermolysis bullosa is a rare genetic skin condition that leaves a child's skin as fragile as a butterfly's wing...

Rachel Yates with her daughter Amy who has 'Epidermolysis bullosa' Rachel's husband to be, Dave, with Amy - one of the "Butterfly Children"

Rachel Yates is 32. She has a 6 year old daughter called Amy who was born with a rare genetic skin condition called Epidermolysis Bullosa - known as EB for short. EB leaves a child's skin as fragile as a butterfly's wing - which is why EB sufferers are sometimes referred to as "butterfly children" in the media. The slightest pressure on their skin can cause severe blistering, bruising and ripping of the skin. Rachel cannot pick her up under the arms, like any normal child as her skin would rip - she has to scoop her up from beneath her bottom and back and has to hold and rest her on silk.

Rachel could only touch her as long as it was soft and direct pressure. The slightest rubbing or friction causes blistering and ripped skin - which meant Amy couldn't even be cuddled when she cried.

Rachel says its exhausting caring for her - but she continues to cope because Amy copes.

Amy is actually attending school now and absolutely loves it. Rachel keeps a positive attitude and just takes it a day at a time, to enjoy the time she has with her beautiful, intelligent, daughter.

Listen to Rachel & Amy's story


More information
D.E.B.R.A. Org UK Website