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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