Amen sister! I am or was, until 4 kids ago, an LPN in L&D and I don't think
there's enough awareness of this!!! You notice when you take your kids to the
doctor's they have to LOOK it up in their book? There needs to be more awareness
and my son is 15 and showed symptoms when he was 10 and his dad did, at the same
time(my ex husband).? My ex didn't know his paternal father, and as a result, we
didn't know this was coming ..or we could have maybe prevented it with our son,
brennon.? Sorry for the spelling and capitals of names..LOL. I'm so tired..we
have 5 kids and I remarried when Brennon was 2, so they aren't at any risk..it's
not their dad. :) I put Brennon on the news, twice, here in Virginia, with the
hopes that we'd find other families or teenagers with it, for an outreach, but
nothing..no calls or responses at all. :(?? Let me know how I can help and I am
here!! Nice to meet you and god bless, Valerie







-----Original Message-----
From: rn1951djc <rn1951djc@...>
To: sticklersyndrome@yahoogroups.com
Sent: Sun, 10 Feb 2008 10:15 pm
Subject: [Stickler Syndrome ] My experience with Sticklersyndrome

























I have two children who were born with cleft palate and we found

out much later that it was due to Sticklers. In 2000 my youngest

daughter had genetic testing that proved that Sticklers was what

caused the cleft palate and she had son who has Pierre Robin syndrome

who also had cleft palate. When my daughter was 2 months old the

doctors told me she was deaf and they also thought that she was

blind. She had surgery when she was 10 months old that was able to

restor her hearing and she has worn glasses from the time she was 6

months old. My second child that had it is her brother who is 18

months older he is now legally blind when he was younger he had lazy

eye and no one noticed it or diagnosid it and when it was finally

noticed it was too late to do anything. Then when he was 20 his

retina detached in his good eye and he had 2 surgeries to try to

reattach it but it did not work. So now he is legally blind. They

both are double jointed both have vision problems. My daughter is now

31 and my son is 32. My grandson is 8 and he has had tubes in his

ears 2 times now and is currently undergoing speech therapy to help

with his speech. He has only had one surgery. My daughter (his mom)

had to have 4 surgeries. I would like to be able to encourage

parents who are feeling over whelmed.

Thank-you. I am a RN and have a interest in helping others who

are dealing with these types of problems.

Debra





















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