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Reply | Forward Message #519 of 811 |
Re: [Stickler Syndrome ] New to the group.

Hi Victoria
My name is Jacqui. I have a baby that just turned the BIG 1 yr a few days ago.
Samuel was born with SS. His father has it as well as many members of his
paternal side. My little guy has mild-moderate hearing loss. He was born with
the joint popping. I hate that part. His joints pop constantly and I know his
bones ache. So far his eyes are perfect. I suspect his spine is not straight. He
is missing a rib and 2 of his vertabrae is not fused together correctly.
Nice to finally see another mom with a young baby that I can relate to.
Welcome

Jacqui







<a href="http://lilypie.com"><img src="http://by.lilypie.com/e6T6m7.png"
alt="Lilypie 6th to 18th Ticker" border="0" width="400" height="80" /></a>

Blaine 14 graduating from 8th grade this year
Kelly 13 graduation from 8th grade too....ADHD, OCD, ODD crazy kid
Shelby 11 No problem child
Aliya 8 (almost in March) glad she isnt the baby anymore
Samuel 8 months such a happy, handsome little baby


---------------------------------
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[Non-text portions of this message have been removed]




Wed Jun 27, 2007 6:07 am

momofbksa2001
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Forward
Message #519 of 811 |
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Hi everyone. Just wanted to introduce myself. My name in Victoria and I have a 6 month old son who was born with Sticklers Syndrome. We have been through many...
tora1209
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Jun 27, 2007
3:38 am

Hi Victoria My name is Jacqui. I have a baby that just turned the BIG 1 yr a few days ago. Samuel was born with SS. His father has it as well as many members...
Jacqui
momofbksa2001
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Jun 27, 2007
6:08 am

Hi Jacqui It was great to hear from you, I also am glad that you have a young baby it helps to know that we can share experiences. The joint popping is awful,...
tora1209
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Jun 30, 2007
2:13 am

Hi Victoria, If you don't mind can I ask did your son's stickler daignosis based on clinical findings or did you guys had a blood test done on him? I have a 5...
Sarah Ahmad
sarahahm
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Jun 30, 2007
2:57 am

Hello all !!! My name is Ann-Marie and my 6 year old daughter, Lauren, has Sticklers. Lauren (who we adopted when she was 18 months old) has PRS, high...
Ann-Marie Fosselman
anniefosselman
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Jun 30, 2007
12:40 pm

Ann-Marie, I would LOVE it if you could send me the info you have. mommajnine @ gmail.com We are very new at SS. We haven't even had our follow up appointment...
Janine
mommajnine
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Jul 1, 2007
12:04 am

Ann-Marie It would be awesome , if you could share this info with all of us, as sticklers seems to be such a rare condition, even my son's pediatrician had to...
Sarah Ahmad
sarahahm
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Jul 1, 2007
2:11 am

Ann-Marie It would be awesome , if you could share this info with all of us, as sticklers seems to be such a rare condition, even my son's pediatrician had to...
Sarah Ahmad
sarahahm
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Jul 1, 2007
2:11 am

Hello all!! I will definately share this. It was such a blessing to receive it when I did. I will have my husband help me with scanning it and sending it...
Ann-Marie Fosselman
anniefosselman
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Jul 2, 2007
12:33 pm

Hello!! We are in Brooklyn Park, just outside the Twin Cities. am Janine <mommajnine@...> wrote: Ann-Marie, I would LOVE it if you could send me the...
Ann-Marie Fosselman
anniefosselman
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Jul 4, 2007
1:07 am

We live in northern minnesota, small town called Thief River Falls. I would love to learn more about this Sticklers conference also, if you don't mind. Sara,...
Sara
saramcarter69
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Jul 4, 2007
1:52 am

Hey, and isn't Minnesota where they're having the annual Stickler's Involved People conference this year? Go to http://www.sticklers.org. and there's all kinds...
abintra2004@...
valinmi31
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Jul 4, 2007
3:42 am
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