Hi,
My name is Mary. My husband Isaiah and daughter Elizabeth (our only
child) are affected with Stickler Syndrome (which came from my mother
in-law's side of the family). My daughter who is 2 1/2 was born with a
cleft of her secondary palate and also has slight Pierre Robin
features. My husband suffers from arthitic joints (which makes playing
his beloved saxophone sometimes painful), complete blindness in his
right eye (due to Wagner Retinal Degeneration which is also a side
effect of Sticklers) and a tall and thin bone structure(he is 6'2" and
130 lbs). My daughter has no eye problems at this time but we are
getting eye check ups now once every 3 months since my husband's
parents think that is when he went blind. She has had her cleft repair
at 13 months of age Nov. 2004 and still has ear tubes in place. Beyond
all that she is a happy, healthy, and well adjusted child. She has some
speech delays in which she is currently getting therapy support. She
love music, Legos, coloring, and every single one of her stuffed
animals.
Thanks for reading my intro. Hope to get to know many others in this
group soon.
Many blessings to all.