Mumsnet Discussions - Help find a cure for our baby boy Liam who has Epidermylosis Bullosa (Charities noticeboard)

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Mumsnet Discussions: Charities noticeboard : Help find a cure for our baby boy Liam who has Epidermylosis Bullosa (21 messages)

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From traceyb1979 placed on Sat 06-Sep-08 18:02:35

Help find a cure for our baby boy Liam who has Epidermylosis Bullosa

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 is going to run the Glasgow Half Marathon that's 13 miles to raise money for Debra. So please help me and all the others who have this painful condition and sponser my Daddy.

Thankyou

Love Liam xxxx

to donate go to www.justgiving.com/liamodonnell

By traceyb1979 on Sat 06-Sep-08 21:16:17

If you would like to help us find a cure please visit www.justgiving/liamodonnell

By traceyb1979 on Sat 06-Sep-08 21:16:34

If you would like to help us find a cure please visit www.justgiving/liamodonnell.com

By traceyb1979 on Sat 06-Sep-08 21:19:09

sorry the link is www.justgiving.com/liamodonnell

By pickie on Sat 06-Sep-08 21:22:36

liams link should be clickable

By MmeLindt on Sat 06-Sep-08 21:28:43

Have donated. Wishing you all the best for the future, your DS is gorgeous.

By traceyb1979 on Sat 06-Sep-08 21:35:54

www.justgiving.com/liamodonnell

By traceyb1979 on Sat 06-Sep-08 21:40:29

Thanks for the donation it's very much appreciated xx

By binkythebullet on Sat 06-Sep-08 21:42:57

good luck and bump

By traceyb1979 on Sat 06-Sep-08 21:47:14

thanks x

By MmeLindt on Sun 07-Sep-08 16:39:41

bump

By traceyb1979 on Mon 08-Sep-08 09:29:44

bump

By traceyb1979 on Tue 09-Sep-08 22:07:53

bump

By traceyb1979 on Wed 10-Sep-08 21:47:33

bump

By traceyb1979 on Fri 12-Sep-08 11:11:16

bump

By vio on Wed 17-Sep-08 03:21:08

Tracey Good luck with the fundraising.

I too hope a cure can be found one day so Liam can play football just like other boys. He's a very beautiful boy by the way. Also, thanks your kind donation. I didn't know you live in Scotland too, if you live near Glasgow then I hope we can catch up with each other one day.

By traceyb1979 on Fri 26-Sep-08 19:47:41

Thanks Vio,

Sorry it took me so long to reply haven't been on in a while!

Jim Jim is such a beautiful boy too and in his memory and so other babies don't have to go through this pain we will find that cure.

I do live in glasgow and would be great to chat with you properly.

My email address is traceyb1979@hotmail.com if u want to chat properly.

Take Care x

By traceyb1979 on Fri 26-Sep-08 19:48:15

bump

By traceyb1979 on Sun 28-Sep-08 22:04:36

bump

By traceyb1979 on Mon 29-Sep-08 22:17:34

bump

By vio on Tue 30-Sep-08 23:53:40

bump

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