Our little Alana, was born in February and was diagnosed with a rare and horrible genetic disorder, called Epidermolysis Bullosa (EB). To put it simply, her skin doesn't work and the slightest touch causes it to blister or tear as it is as fragile as a butterfly's wings, giving rise to its more common name, 'Butterfly Skin'.
It’s a debilitating, incurable condition (for now!) and sadly, Alana will have to endure pain and constant bandages for the rest of her life.
All we can do is try and make Alana's life as comfortable and pain free as we can. She requires round the clock care (obviously more than the average newborn!), which unfortunately makes it impossible for Rachel and Greg to work full time anymore. So we are raising funds to help her in any way we can and to be ready should we get the green light for new treatments overseas. Any donations are gratefully accepted xxx