--- In sticklersyndrome@yahoogroups.com, "Joni Trout"
<crazytrout@h...> wrote:
> 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@y...>
> >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.
> >
> >Lovely to hear that your family are living happy lives even with
this condition.
> >