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sticklersyndrome · Stickler Syndrome - Stickler Syndrome stories and support
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new to pierre robin sequence   Message List  
Reply | Forward Message #634 of 811 |
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
Wed Jun 4, 2008 3:29 am

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beaglenurse13
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Forward 		Message #634 of 811 |
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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... 		Valley
beaglenurse13
Offline Send Email 		Jun 4, 2008
3:29 am

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...
Mario Fedele
mario55o
Offline Send Email 		Jun 4, 2008
4:04 am

Hi Val, My daughter was born with the Pierre Robin sequence cleft palate and receding chin. The important thing is to find a surgeon the parents can work with....
Marla Lemonik
raitzarose
Offline Send Email 		Jun 4, 2008
1:31 pm

Marla,  thank you!  We are in   day3!  Theparents are  very frustrated already.. scared, as am I.  But thankfully they aredoing    remarkably...
VALLEY FERRELL
beaglenurse13
Offline Send Email 		Jun 4, 2008
8:26 pm

We met our daughter when she was 10 years old. She came from a home of gross neglect. It took us 2 years to get her diagnosed with Sticklers Syndrome. She has...
Lori Taylor
daveloritaylor
Offline Send Email 		Jun 5, 2008
5:48 pm
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