Every morning Anne Marie spends two and a half hours changing daughter Tia’s dressings and popping new blisters that have formed in the night.
Tia is two years old and has a severe form of EB. When she was born Anne Marie immediately knew that something was wrong, as she was in immense pain with no skin on her legs, feet and on parts of her tiny hands and was rushed into intensive care. Tia remained in hospital for the first six months of her life.
Tia is now home with her Mum and Dad and, despite all the problems to come, they are all receiving invaluable support from their dedicated DEBRA charity Community Support Manager who is able to provide them with practical and emotional support when things get particularly bad. Anne Marie puts it into her own words. “She is like a best friend to me with a wealth of knowledge on EB. She’s always on the end of the phone and I honestly don’t know how I would cope without her support. One minute I’m able to just get on with it and the next I find myself crying and thinking ‘why my daughter, why us’”.
On the 23rd April 2017 I will be creating my own blisters, running 26.2 miles in the London Marathon!
Having not exercised for over two years, and only having a few weeks’ notice, this is proving particularly challenging!
Your support is invaluable to continue helping children just like Tia live a better life and to fund pioneering research at a time when genuine advancements are happening. By donating, you can help eradicate EB in our lifetime.
£15 can buy a special needs feeder system for babies who have blistered mouths
£25 can pay for one hour of research to bring us closer to finding a cure for EB
£50 can fund two additional home visits, which is critical for those finding it impossible to travel
£100 pays for an essential sterile changing unit required for all the frequent dressing changes
It would be great if you could join the other fantastic friends and family from Cople who have already sponsored me for DEBRA by donating to my fundraising page here:
Fund raising will not stop after the marathon, if you would still like to help me to help DEBRA please click this link to add your support and help this incredible charity
Thank you, Laurence Whiting
ED: If you live in Cople, you may well know Laurence, he was born, went to school and grew up here
Information about DEBRA by clicking here, this is a charity that really needs your support for these unfortunate children