Kasey's Family Made this Web Site To:
What does Kasey Have? Kasey Knauff was born with Congenital Erythropoietic Porphyria, a very rare disease with many serious symptoms and problems, the most recognizable being the susceptibility to UV rays and fluorescent lighting. Exposure to sunlight or fluorescent light can result in severe burning and blistering of the skin. The only known cure for Kasey is a bone marrow transplant. Without the transplant Kasey will never be able to lead a normal life and would be at risk for serious future problems such as the need for a liver transplant or splenectomy. A search for a bone marrow donor is currently being conducted. Once a donor is found Kasey will need to be at the Cincinnati Children’s Hospital for a minimum of 45 days for the transplant and an additional 100 days at a nearby hotel for monitoring of her condition. She will then return home where she will remain in seclusion for 6 months in order to prevent infection and illness. Kasey’s road to recovery does not end with a bone marrow transplant. After the transplant she will need to undergo plastic surgery due to the burns she received while in the hospital being treated for jaundice. These burns have left her severely scarred with disfigurement to her arms, legs, and hands. Even with multiple operations Kasey will always have some degree of scarring. Our hope is to give Kasey a chance at a normal life - to give her her day in the sun.
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