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About Forest

Forest was born with a rash and no other symptoms of illness. In the next few weeks he developed  low grade fevers and a failure to thrive. He was admitted to the University of Kentucky and unsuccessfully diagnosed. While there he became septic with Strep and Staff. Later he was transferred to Cincinnati Children's Hospital, where he was diagnosed with Omenn Syndrome. He displayed all of the clinical symptoms described in aforementioned case study by Terry Harville. He was then transferred to Duke University for treatment by ablative chemotherapy and bone marrow transplant. Forest continued to be septic with a variety of bacteria and fungi while waiting for transplant. His liver and spleen were so enlarged he went into respiratory distress on several occasions and had to be sustained by ventilator. Due to necrotic areas in the spleen he underwent a splenectomy. On Jan. 13, 1995, after a regiment of Busulfan, Cytoxin, Melphalan, and ATG, he received his infusion of bone marrow that had been depleted of mature Tcells which left only stem cells. Forest's bone marrow engrafted quickly and he was moved from the bone marrow unit in about 2 weeks. His skin cleared up remarkably fast and he began to make great progress. Forest is now 4 years old, and  is 4 years post transplant.  He has a completely normal functioning immune system. There are still minor issues to be dealt with, but Forest is considered cured. To those of you who are seeking information due to the fact that you have a child with Omenn Syndrome, Forest is a testament that there is hope. Feel free to contact me at any time for information regarding his treatment or about the disease process itself.

Amanda Madden
PO Box 187

Isom, KY 41824


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This page last updated 09/20/05