Hi Val,

My son was born with Stickler's syndrome, and we went
through much hardship because of it.
I've chronicled our experiences in my memoir, titled
"God's Gift."
He had a cleft palate of the soft tissue, including a
whole slew of other symptoms as well.
The book might be of interest to you as there is not
much material out there pertaining to the subject.

Mario

--- Valley <valleyferrell@...> wrote:

> Hi, my name is Val, and I happen to be an RN. But..
> my grandaughter
> was born sunday June 1 , with Pierre Robin sequence.
> she has a cleft
> palate and a receding chin. As far as
> sticklersyndrome, we have not
> be diagnosed with that yet. I am just out here
> searching for
> information, support. This is my son and his
> girlfriends second
> child. Looking for any support we can arrange...
> thanks for any help
> or information.
>
> Val
>
>


Mario S. Fedele
God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs.com/mario5o/
http://www.champagnebooks.com/
http://www.myspace.com/mario5o
http://www.bestbookdeal.com/book/compare/1897261888/


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