Been a busy few weeks so want to quickly catch you up on a few things.
The Spring ball was an amazing evening raising funds in aid of DebRA UK
Heavy hearted as little Chloe was laid to rest today after she lost her battle with EB, Her parents & family are deep in my heart & thoughts.
Chloe is our 5th baby we know about passing in 2012 and its heartbreaking, its like grieving for your own family instead of someone who you never got the chance to meet.... surely a CURE is in sight?!?!
Im not gonna give up fighting for this, will you join our "Butterfly Army"?
Please educate yourselves and speak to someone about Epidermolysis Bullosa ~ EB. The more people that know about this condition the closer we get to funds for this much needed cure.