My name is Joni. I am the mother to Ethan (perfectly healthy), and Evan
PRS/Sticklers; I am also the wife to Paul (Sticklers), sister-in-law to
Tiffany (PRS/Sticklers) and daughter-in-law to Nancy (PRS/Sticklers). Our
biggest challenge has been with Evan and his PRS. at this time the only
sticklers trait that is obvious is the high myopia. My husband is blind in
one eye and has had the other repaired. We definately have a family history!
I really do not know what advice to give as I have not "raised" a child yet
with sticklers. I do know that my husband and sister-in-law have lead very
normal lives and are very happy. I look at it different now having a child
with sticklers, but I never looked at it that way with my husband, he does
not feel that he has any type of dissability or anything. My sister-in-law
is a beautiful 27 year old looking forward to her wedding this October.
Don't let the "label" of sticklers discourage you. Yes, there are obvious
things to protect your child from, but they will grow up "normal". I hope
this helps in some way. It does give me encouragment to look at my husband
and his family, I know that Evan will be fine just like they are.

>From: "lisahutchins17" <lisahutchins17@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: [Stickler Syndrome ] (unknown)
>Date: Sun, 31 Jul 2005 23:18:30 -0000
>
>Hello my name is Lisa and I am the mother of Ross who has Stickler
>Syndrome. He is 3 years old now and was diagnosed at birth. He had a
>cleft palate, has high tone deafness and severe myopia. He also has
>enlarged joints so pretty much the full blown thing as per literature
>I have read. I have never met anyone else with Sticklers as yet or
>any
>other parents of a child with the condition. There is no one else in
>the history of our family with this genetic condition so we think it
>must be a throw back from somewhere or Ross is just unlucky and is
>now
>at the start of the chain. i would love to hear from anyone who has
>any advise for me or another family with a child who has grown up
>with
>this condition.
>
>
>