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    1. [KORNEGAY-L] Duplin County families
    2. Gayle Licari
    3. I would like to share with those who are searching their lines of Duplin County, NC. I have been searching for 25+ years. In 1984 my genealogy search took on a different meaning. My 18 year old dau. Dee Dee was diagnosed with a lethal genetic illness FANCONI APLASTIC ANEMIA. She had just graduated from high school when her diagnosis was made by doctors from Duke University, in Durham, NC. The hematologist questioned us thoroughly about our family history. They wanted to know if my husband and I were related. We were not. He was Italian/Irish ancestry from New York and I was English/Irish/German ancestry from Wayne County, NC. The doctors told us then it must be in your background somewhere. I carried the faulty gene and so did my husband therefore causing Dee Dee to be born with both faulty gene.(Enormous odds for this to happen) but it did. In the summer of 1985 another family the Frohmayers of Oregon was faced with the same diagnosis. Their 2 daughters were diagnosed. They mustered research for this horrendous disease that robs children of their health and lives at a young age. >From their efforts and others research around the globe began to find the cause and cures for our children's lives. Dr. Guido |Fanconi, a Swiss pediatrician who this disease is named after was one of the first researchers and treating physician to children born with Fanconi Aplastic Anemia. Since 1985, our family had the opportunity to attend two symposiums for families, doctors, and researchers. We learned that families who intermarry have an increased risk for their offsprings to be born with FAA. They know as many as eight (8) faulty genes play a part to this mystery. So far researchers have identified 2 FAA-A and FAA-C. Research is ongoing in NEW YORK, HOLLAND, GERMANY, ENGLAND, ISRAEL so that better cures will be found and offered to children suffering from this lethal illness. Many of the children do not live past 12. Only 5% live past 21 years of age. Dee Dee lived just past 25. She was fortunate there was a perfect bone marrow match for her, but by the time the procedure had been perfected her health had declined to point she was not a prime candiate for the transplant. But when you are faced with only 0 zero percent chance of life and you are offered a 10 to 15 % chance you will grab at that chance. Dee Dee was a spunky kid filled with lots of moxie and she displayed bravery and courage thorough out her short life. It has been 7 years since Dee Dee's battle for life and good health ended, and everyday I love and miss her. I try not to be bitter at our ancestors because they didn't know and I surely didn't know, but I have a different way of viewing genealogy than I did before my daughter's diagnosis and death. I know you are thinking anemia doesn't kill, but this Fanconi Aplastic Anemia does. It progressively shuts down one's bone marrow from producing red, white cells, and platelets. The children are more prone to leukemia, also. In a few days a friend will hve completed a Memorial Web Page for Dee Dee and I would like to share the site with everyone on the list serv. Gayle W. Licari

    06/17/1998 06:46:21