[ Post a Response | 22q Deletion Interest Board ]
Posted by Ganny on 2/27/2009, 9:42 am, in reply to "Re: Complete Digeorge syndrome"
65.79.69.194
Hi , i had to study this , in biology and i would like to say im very very sorry
--Previous Message--
: 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
:
: Best Regards,
: Emily Ogle
:
: --Previous Message--
: 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
:
:
:
:
:
:
Message Thread:
« Back to thread