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Our beautiful daughter Melina was born in January, 2010 with EB Simplex, Dowling Meara. Our lives were forever changed.
She is the STRONGEST person I know - and inspires me every day! She is a happy, funny, caring, wise, and GORGEOUS girl. We are so blessed to have her in our lives!
Melina has a mild form of EB Simplex (her blisters are not widespread or internal) with serious wounds on different parts of her body. She blisters mostly on her feet, toes and ankles, hands, face and occasionally on elbows, knees, thighs, back, bottom, neck, mouth and tongue. As part of daily wound care, we lance her blisters with a sterile needle and apply pressure to remove the fluid within the blister. This is an awful and painful process for her, and for us! We must constantly take measures to prevent bacteria from colonizing in her wounds to prevent infections.
In spite of the pain and frustration of EB, she remains a happy and well adjusted little girl! She dances, sings, plays basketball, rides horses, does yoga, runs (some days) and plays like most children her age. EB is part of her, but it does not define her!
There is NO CURE FOR EB. There is only prevention of blisters and daily wound care.
I Refuse EB invests in bold research that leads to life-saving treatments for children who suffer from Epidermolysis Bullosa. We want to help raise money for this important cause, we want to find a cure. Please join us in our fight to find a cure!
AWARENESS - FUNDING - RESEARCH - CURE!
Thank you for your support!
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