www.debra.org.uk - The only charity in the UK working for people affected by EB.
Liam O'Donnell
Hi my name is Liam and i am 8 months old. When i was born i had perfect skin...but when i as 2 weeks old my fingers got sore with blisters. My mummy showed the doctor but he did not know what it was and thought it would go away but it didn't it got worse and by the time i was 3 months i had blisters and we white scars all over my hands and feet and some of my toenails had event fell off.
My Mummy knew something was wrong and got me an urgent referral at Yorkhill sick kids hospital. It was there that the doctors mentioned Epidermolysis Bullosa (EB)! I had to go back and get blood taken which was very sore and i was crying. The doctors suspect i a have EB but it might take up to 2 years to confirm this.
However, im one of the lucky ones as they think i have a mild form. Other babies have died with EB and have blisters all over their body. I still get blisters on my hands and feet that my Mummy has to burst with a needle before they get too big...sometimes this makes my mummy upset to see me in pain. My mummy says im her brave little solider.
A special nurse from the charity Debra came to visit and gave my mummy and daddy special cream and bandages that i have to wear.
I like to watch my big cousin Sean play football and one day i'd like to play football like him. I'll only be able to do this if we find a cure for EB!
My Daddy ran the Glasgow half marathon(13 miles) in 1 hour and 45 minutes. Now my Mummy is going to do the 5k fun run. So please sponser my Mummy and help find a cure.
Hi it's Liam here...im now 3 years old 4 in October. My skin is still sore...i haven't been out to play without bandages on my legs for over a year now and i still get blisters on my fingers. My type of EB still hasn't been identified but the researchers are working on it...doctors believe i have a new mutation. Im playing football all the time now with my big cousin Sean...i don't let it hold me back.
My sister Zoe and I (oh yeh i'm a big brother now!) are doing a toddle waddle around the big loch in East Kilbride and trying to raise some more money for DebRA would be grateful if you could sponser us
Thankyou
Love Liam xxxx
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