We are a non-profit organization which is dedicated to improving the quality of life for children with a disease called Epidermolysis Bullosa (EB)
EB is a rare genetic disease that affects the collagen (protein) that binds the layers of skin together. The incidence of EB is 1/20,000, so it is relatively rare, but for those affected, it is extraordinarily painful and limiting.
Children who are born with EB do not have the "roots and glue" that bind the layers of skin together. Any trauma can create blisters and sores that are very painful and require daily dressing changes. Think of the skin being like Velcro, without the hooks or a lawn of grass without roots to hold the grass in place.
EB is a very expensive disease due to the extensive care that many of these children need for their entire lives. Children require frequent hospitalizations, specialized dressings, which do not stick to the wounds, and they often must use power wheelchairs or scooters to get around. Frequently, children must be fed by G-tubes due to sores and constrictions in their mouth and esophagus, and they suffer webbing of their fingers limiting their fine motor skills. Although they live with constant pain, they have normal hearts and minds and an indomitable spirit. They just want to be like other children and enjoy the activities that their friends enjoy
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