Our beautiful daughter Melina was born in January, 2010 with EB Simplex.
She is the STRONGEST person I know - and inspires us every day! She is a happy, funny, caring and GORGEOUS little girl.
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, and occasionally on her hands, face, elbows, knees, bottom, mouth and tongue. As part of wound care, we lance her blisters with a sterile needle and apply pressure to remove the fluid within the blister. This is an awful 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, 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.
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!
EB RESEARCH PARTNERSHIP
We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.