I just got the call yesterday that Aubrey's tests came back positive
for ss. Aubrey is almost 5. She was born with a soft cleft palate. She
is extremely flexable. Dh and I are going to be tested and then we
will meet with Aubrey's team to see what happens next. I'm suspecting
that I might also have it. I have back and joint issues, including
back surgery 2 years ago. We also have 3 other children; Zane 7,
Abilaine 3, and Zion 11 months.

I'm very new to this and am just starting out on my research. So far
other than the geneticist, none I have talked to has even heard of
this syndrome.