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Posted by Emily Ogle on 12/3/2006, 9:17 pm
71.80.67.181
Hi My name is Emily and I have a three month old son with complete Digeorge syndrome. I am having complications in finding anyone to talk to that has a child with the same problems. I know of quite a few whose children have partial Digeorge, but from my understanding only a small few are considered complete. My son has tetralogy of fallot and a total lack of immune system. This has caused us a great deal of issues. He also has no parathyroid glands which cause him extreme hypocalcemia. We just brought him home from the NICU last week and he is on thirteen medications along with a feeding pump. In January we are going to fly him to Duke University Hospital to have a thymus transplant. The doctors are also going to take either my husband or my parathyroid and transplant that also. They mentioned to us that if this does not work he will die before the age of one. I was wondering if anyone else has experienced any of these extreme issues. My husband and I are in our mid 20's and would just like someone with the same issues to correspond with. Feel free to contact me anytime.
Emily
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