Raising Awareness and Hope for the “Butterfly Children”
In conjunction with Epidermolysis Bullosa Awareness Week, October 25-31, Pioneering Unique Cures for Kids, our parent driven initiative, seeks to build support for the research team that is delivering the first real hope to help children inflicted with this devastating disorder that has been described as the “the most painful disease known to man.”
A child born with Epidermolysis Bullosa, or “EB”, has a deficiency of one of several proteins that anchor the skin to the body. One such protein is C7—an important form of collagen. Without enough of these proteins, the skin tears and pulls away from body easily, causing serious wounds and recurrent blistering. In severe cases of EB, the soft tissues inside the body are often also affected, such as the lining of the mouth, esophagus, stomach and intestines. Many children with the severest forms of EB often do not reach their teenage years, and some die in infancy.
Hope for the Butterfly children
People with EB have come to be known as “butterfly children” because their skin is delicate, like the wings of a butterfly. It is a fitting symbol. There is no current cure for EB, but recently physician-researchers at the University of Minnesota demonstrated that a lethal skin disease can be successfully treated with stem cell therapy, improving the condition of the skin. Under the leadership of Drs. John Wagner and Jakub Tolar, leaders in blood and bone marrow transplantation, there is hope through their research for children suffering from the most severe forms of EB.
How to help
Due to a match grant opportunity, tax-deductible donations made now to PUCK will be doubled. All will go directly to this EB research. Click here to make a donation online or text “BELLA” or “TRIPP” to 50555 to donate $10. Visit the PUCK website for more details.
Throughout the week, we’ll be posting EB Awareness Week content on PUCK’s Facebook page. Friend PUCK now on Facebook.