Defying the odds
Ellie’s condition is 3 in a million (so where’s our winning Lotto ticket????). On day 1 we were told she’d never grow hair on any of the areas where she was born with missing skin. Obviously our little girl has decided to prove them wrong…she is growing hair, and lots of it!!!!! There are still areas where the hair is not going to grow back and they will still require plastic surgery, but they are so significantly smaller than the original areas that it seems so tiny now!!
She’s still got a (very) chunky scab on the back of her head which I think will be lucky to be gone by 6 months but it is such a cool feeling to see her hair growing in patches. At the front by her forehead she’s got a diagonal line of hair growing so it looks like some crazy mohawk lol 
The dermatologists are shocked with her hair growth…hopefully she’ll continue to defy the odds…go Ellie!!!!!!
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Having just read your blog, with a few tears in my eyes and my heart feeling so much for you; I have to tell you what an amzing mum must you are. Your blog is amazing, it will be something you can share with Ellie as she grows up. We all think our baby will be perfect and nothing will go wrong. I remember that horrible feeling when your child is rushed to NICU.
I just wanted to say I admire your strength, Your daughter is beautiful.
hello i have just come across your page as i am a nursing student who is doing a project on a rare disorder called adams oliver syndrome i dont know if you have heard about it but it is a rare genetic disorder with a range of symptoms including cutis aplasia. i admire your strenth as a mother and wish u and you little girl all the best i have a very close friend who has a two year old son with cutis aplasia we are from essex and i fought that mabie if you want a friend that can relate with how you feel i could pass on your details to her she is a 21 year old mum too little alfie george. either way i wish you alll the best with the future feel free to email me for her details if you wish too my email adress is [email protected] all the best xxxx
We often joke that Zay has got to play the lottery when he’s old enough, because he’s the “luckiest” boy we know, lol.
BTW, at birth he only had a ring of hair around his head. Eventually it filled in except on the actual scars and along the veins.