I have a beautiful 8 month old daughter named Chloe who will probably
be diagnosed with NS. I say "probably" because she is in the process
of being diagnosed, but hasn't received a definitive diagnosis yet.
We live in Dallas, but take her to doctors at Texas Children's
Hospital in Houston. Does anyone out there know of any support groups
for Noonans parents in the Dallas area? We are anxiously waiting on
the results of the first genetic test for the PTPN11, but I know the
test is pretty unreliable. Chloe has many of the physical
characteristics of NS, so can a diagnosis be made strictly on the way
a person looks? Is there anyone out there with NS who also had a
cystic hygroma? Chloe has an AV canal heart defect, a cystic hygroma
as well as many of the other facial characteristics. Any words of
wisdom from parents of children and/or people with NS would be greatly
appreciated. My husband and I are overwhelmed and anxious. Thanks
very much!