Becky
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| Introduction | Elizabeth Cady(Baby Elle)was born 12/7/09.She was born with Epidermolysis Bullosa, a rare genetic disorder in which proteins are deficient or absent that give skin the "glue" that holds tissues together. Children with EB blister at the slightest friction and have open, painful wounds all over their bodies. The treatment is wound care and infection control. Elle had the Junctional, Herlitz subtype which affects skin, all mucous membranes (mouth, throat, gut)and respiratory tract. It's the most lethal. Elle was a sweet baby and her strength astounded me. She cried less than a perfectly healthy baby. She was very alert and smiled frequently. She loved bright colors, dangly things, her own hands, her baby doll, balloons, new faces, and her sister, Chloe. Elle took part in a clinical trial at the U of M. The trial is meant to replace the missing proteins and give children with severe forms of EB a chance. It is the beginning of cure. Although she didn't survive EB, she reached many around the world and taught us much. She melted hearts, brought communities together, and brought out the best in people. She had a short but very meaningful life. |
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