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Posted by Emily Ogle on 6/4/2007, 3:52 pm, in reply to "Re: Complete Digeorge syndrome" Best Regards, --Previous Message--
24.159.177.118
Sarah,
I am sorry to hear about your son. Maybe I can be of some help to you. I think I know more about DiGeorge than I care to. My son, Cooper, actually passed away from complete DiGeorge on April 30th, and anything I can do to help, i will. Complete DiGeorge means the person lacks a thymus (which is the gland that develops your immune system, without it-no immune system). We actually flew our son from the hospital where we live, to Duke University Hospital, where there is a wonderful doctor (Louise Markert), who specializes in children with no thymus. My son was going to have a thymus transplant, but do to other problems(heart surgery- that caused a brain injury, and a tracheal problem) he passed away before it could be done. I would love to talk with you anytime. If you need more information please email me. I can give you the contact info for the doctor at Duke. If you would like to check out my son's website cooperogle.blogspot.com
it might give you some more information
Emily Ogle
: Hi my name is Sarah. My 16 month old
: son has DiGeorge Syndrom. I don't
: know the difference between the
: partial and complete. But my son is
: lacking the immune system, doesn't
: have a thymus gland, had tetralogy
: of fallot. None of my doctors have
: knowledge of DiGeorge Syndrom. So
: I'm not getting any answers. They
: only stuff that I've found out about
: it is from the internet. Most of
: the time my mom and I have to tell
: the doctors what is going on.
: Please get in contact with me.
:
: --Previous Message--
: 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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