Hi Amber

Thankyou for your information. It is lovely to be in touch with
others sharing in this situation.

They won't do embryonic testing for this particular syndrome. It is
only available for a few others in this country (Australia).

However i don't know if I would want to take that path anyway. All
of us who have had Sticklers without knowing have all had a very
good quality of life, so hopefully this will make our decision to
have another child easier. That and the fact that our little girl
Alannah is the most gorgeous creature on earth (very biased of
course!!!)
Very interesting to see how it has travelled in your family. Myself
and my mUm are only children, so we can't really see any type of
pattern.....

Simone

--- In sticklersyndrome@yahoogroups.com, "Amber" <poetmash@y...>
wrote:
>
> Hi! My husband was diagnosed w/ Sticklers when I was PG w/ my 1st
> child when seeing a genetics doctor. Thats when we figured out
lots
> of his family members have Sticklers. Yes there is a 50/50 chance
> each child will get it. Both my kids have it. Out of my mother in
> laws 3 only one of her kids (my husband) has it. One of my
> husband's cousins has had 8 or 9 kids & most of her kids have it.
> Whether you decide to have another child is a personal decision
for
> you & your husband. I have also heard of a procedure (if you can
> afford it I can't) where you can have embryo selective process
where
> your child has no genetic problems you'd have to ask your doctor
> about that. I hope some of this info has helped. ~Amber
> >
> > Hi everyone,
> >
> > i have not visited here since last September as we were told
> > Sticklers was unlikely for Alannah our little girl. Well heloo
> hello
> > she has just been diagnosed at 10 months and has come as a bit
of
> a
> > shock. With her diagnosis comes mine also and my mum and my
> > grandmother. 4 generations of us so far, and we never knew!!
> > Is this quite common???
> >
> > We are quite aware now of all that Sticklers involves and I had
> made
> > myself look things up in the early days when we weren't sure.
> >
> > My husband and I had made a decision to have a third child
(Damon
> 3
> > 1/4 no Sticklers, Alannah 10 months Sticklers Pierre Robin,
> > mandibular distraction, moderate hearing loss, short sighted, no
> > current joint problems) about 2 weeks ago and then last week
they
> > gave us this news......
> >
> > Before we go ahead and start trying for another, we would like
to
> > know what other people have done in our position. It is a big
> > decision knowing what can happen - a 50/50 chance.... we have
two
> > beautiful children now, but I have always wanted three......
> >
> >
> > Help anyone
> >
> > Simone Hill