Hi Jenn,
I know what ya mean about not knowing what stickler syndrom was..I didnt
know til my son was 15..He had a retinal detachmet and then we found out.He
has had 9 surgerys since...He has no sight in his left eye and 20/40 in the
other...Hes a trooper and keeps on fighting..honor rool every marking
period...Hope all goes well with you..All my best,Charlene

>From: Jennifer Moore <jenns_too_sweet2002@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: [Stickler Syndrome ] New Member
>Date: Sat, 29 Jan 2005 11:52:49 -0800 (PST)
>
>
>Hi, everybody. I am so happy I found this group. After reading some of
the messages, I just knew that this was a wonderful group and so supportive.
>
>My name's Jenn and up until a year ago, you would've gotten a blank look
from me if you'd said Stickler Syndrome. It's hard to believe that something
I'd never even heard of before could suddenly become so completely
intergrated into my life.
>
>A little over a year ago I took a chance by meeting someone offline I'd
talked to online. Turned out, it was the best chance I ever took. Mark is
the best thing that ever happened to me and he's given me the best gift I
ever knew I wanted; our son, Christopher Lance.
>
>I know how idealist I sound, but it's not all rose colored glasses. Mark
has Stickler Syndrome. He's completely blind in his left eye and only has
partial vision in his right. He also has a slight heart problem, and the
beginnings of joint problems.
>
>Christopher goes to a geneticist next month. I hope we'll know then.
This being in limbo not really knowing for sure, but suspecting because he
has a cleft palate. God forgive me for saying this the wrong way, but after
waiting this long I don't care so much what the test results are just so we
can move on with our lives.
>
>We have two excellent doctors working with Christopher (I mean, when we
took him this week, one of the doctors actually called my house because she
forgot to mention something while we were there. Now that's old school
doctoring.), but because of his cleft palate he's plagued with ear
infections and now he's not gaining weight proper ( He only gained 2 ounces
in two weeks.) so they're talking about tube feelings. Other than that, he's
the sweetest, most thoughtful baby you could ever meet.
>
>Well, I'm trying not to ramble on too much, but it's nice to know that
there's people out there nodding their heads when I mention Christopher's
problems. Thanks for letting me vent. Looking forward to hearing from
everyone.
>
>Yours,
>
>
>
>Jenn
>
>
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