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Forest's Omenn Syndrome Page

Welcome to Forest's Omenn Syndrome Homepage

The entire purpose of this page is to help those researching Omenn Syndrome.  Some of the page will be dedicated to the progress made by Forest.   Forest is a little boy with Omenn Syndrome.  Some of the page will be dedicated to information about Omenn Syndrome.  If you have more information or know of other references on the Internet please feel free to contact me.

Meet Forest:

Forest at his BMT

Here is a picture of Forest which was taken while he was being infused with his bone marrow transplant. This picture was taken on January 13, 1995.   His mother was his donor.

 

Forest as he grows

Here are pictures of Forest as he's grown.  On the left he is seen with Dr. Terry Harville.
On the top right he is with Maggie Caruso

 

The following is part of an introduction from a case study Drs. Terry O. Harville, Denise M. Adams, Thad A. Howard, and Russell E. Ware published in the Journal of Clinical Immunology, Vol 17, No.4, 1997:

"Omenn syndrome is a rare form of combined immunodeficiency (CID) of unknown etiology characterized by a constellation of clinical signs and symptoms including pronounced scaly erythroderma, failure to thrive, eosinophilia, increased IgE levels, lymphadenopathy, hepatosplenomegaly, defective B and T lymphocyte function, greatly increased numbers of T lymphocytes, and death usually before 5 - 6 months of age.  Additional findings include lymphocytosis and histiocytosis within skin and other tissues. Over thirty years ago Gilbert Omenn first described a kindred of affected infants with "reticuloendotheliosis" and postulated an autosomal recessive inheritance pattern for the disorder which bears his name. Since then, sporadic cases have been reported and milder variants have been described."

(You can click on any of the underlined words above to see a less technical description of the word.)

Omenn syndrome is now successfully treated with ablative chemotherapy and a bone marrow transplant. Some hospitals choose to use an unrelated donor that has as close to a 6 of 6 HLA match as possible, other hospitals use one of the parents as the donor and remove the mature T cells from the marrow before it is given to the patient. Out of about 150 diagnosed cases of Omenn syndrome there have been about 30 survivors world wide. Early diagnosis is extremely important, as is prompt treatment.

Forest was diagnosed at 1 and a half months and received his transplant at 4 months old. He is doing extremely well. His transplant took place at Duke University Hospital. It is also important when choosing a facility to treat Omenn's that you find a hospital which has experience dealing with Omenn Syndrome. We had to travel several states away for treatment for Forest.  For more information on Forest, click on the link "About Forest".

 

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Forest was among those children participating in the First Family Pledge Congress on April 14th 1999.  Find out more about this historic event.

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For information on this web site or to send information to Forest's family email amadden@bigfoot.com  
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This page last updated 09/20/05