[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by joy
on 9/15/2008, 6:17 pm, in reply to "Re: 5 month old Daughter with partial 22 trisomy, looking for others with same situation"
165.166.206.124
i have a daughter that is 18 months and has emanuel if you would like to chat email me.. joy
--Previous Message--
: HiJayme,
: My son was diagnosed with the partial
: trisomy of chr. 22 when he was 8 weeks
: old. He is about to turn 8 yrs this
: coming september. He is making little
: progress but to us is huge! He is
: almost walking by himself and he is a
: happy boy. His teacher at school has
: help him a lot and its being hard but
: im taking day by day. Write to me if
: you need anything.
: Thanks
:
: --Previous Message--
: Hi Jayme!! My daughter Alyssa was
: diagnosed with partial trisomy 22 at 1
: week old. She developed NEC at 1 1/2
: weeks old and lost a large amount of
: bowel. She had a fundo and gbuton
: done at 3 months old. I've found alot
: of answers through Gene Reviews and
: Stephanie with C22. Unfortunately,
: due to numerous medical difficulties
: Alyssa died in October. I've found
: support through C22 and other parents.
: If you need anything let me know.
:
: jennifer
:
: --Previous Message--
: Hi there,
:
: My 5 month old daughter was recently
: diagnosed with Partial 22 Trisomy, and
: I am looking for resources to expand
: my knowledge and families to share my
: experiences with.
:
: She is 11 lbs and 20.5 inches long.
: She hasn't grown much since she was 2
: months old. She is a reflux baby and
: we are getting a g tube put in and a
: fundalplacation in the next few weeks.
: She was born at 35 Weeks at about 30
: weeks gestation. She has a weird echo
: on her liver, but otherwise she is OK
: so far. The Doctors say she is unique
: and we really don't have any case
: studies to go off of yet...
:
: I hope to connect with someone who has
: experience with this.
: Sincerely,
: Jayme Southard
:
:
:
:
:
Visit our home page, http://www.nt.net/~a815/chr22.htm