Hi Mary! My name is Joni. My husband, sister-in-law, mother-in-law and
youngest son have sticklers. My son also has prs. My oldest son who is 3 is
unaffected. Evan is 18 months now and doing great. He has worn glasses since
he was 2 months old. I think that it is great that your daughter shows no
signs of eye problems yet! My husband lost sight in his right eye at the age
of 5. In his left eye his retina began to detach at the age of 8 but they
were able to save it. He is also a musician. He plays the drums and bass.
Although his pain really has not affected that too much, but it has affected
his love of playing volleyball! Thank you for sharing your story!


>From: "Mary" <ismar822@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: [Stickler Syndrome ] My Family's Intro
>Date: Mon, 27 Feb 2006 08:13:23 -0000
>
>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.
>
>
>
>
>