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Posted by Holly on 5/4/2007, 12:33 am, in reply to "Complete Digeorge syndrome" --Previous Message--
204.56.5.130
: 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
:
:Email me my son is 16 years old w/ complete DiGeorge. He has had the thymus transplant. Doing ok. Holly
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