Hi Peggy...it's okay..it took me 4 months to explain email to my mother in
law..LOL. Brennon was not diagnosed with it until he started going blind in his
right eye, at the age of 10.? Let me explain why..his father and I married at
the ripe ages of 19..not ready to, but we did anyhow.? We were together a year,
when I found out that his Dad never knew his own birth father.? Okay, at that
point, I'm thinking "How sad.." but then I started thinking "If we have kids, I
need to know the family medical history".?? Well, needless to say, we got
pregnant with Brennon in '92 and I found my husband's birth father..I am that
good..haha. (joking)? I then find out that his mother (my ex's grandmother) has
Acromegly? What is that? (I thought) Okay, the Stickler's was never mentioned
and then in '97,?when Brennon was 3 years old, she passed away.? We then find
out that she also had Stickler's..she knew it but it was never discussed.? My
ex, (Brennon's dad) then, being 32, started showing symptoms..his retina in his
left eye started to detach.? Then his right eye.. it was awful. I kept thinking
"Oh wow..by the time Brennon's?32, they'll have a?cure..I just know it."? Well,
I spoke too soon because?in 2000, just as Brennon came back from?visiting my ex
in Tennessee, he complained of seeing "yellow dots" in his right eye. I took
him?to the?eye doctor that afternoon, and the next day in Grand Rapids, he was
in Surgery, with a Retina Specialist we had also gone to.? I?was told that his
retina was detaching and that he more than likely had the STickler's..I was
thinking why?NOW? What has he seen? Nothing..10 years old is a baby still.?
Well, then I went through the "why can't it be me" phase.? Since that day, he's
had 6 surgeries in his right eye, three gas and three oils, to heal it, and
nothing held it in place.? Now he's starting to lose the left one.? We've been
back to John Hopkins 10 times this year and last.? It's been something..that's
for sure.? I know that Brennon has kids stare at him, (he's 15..they're cruel at
that age) but it hasn't stopped him. He's an inspiration to all young kids, that
have it, if you ask me. He's strong willed and yes, more mature for his age.? He
is getting a prostetic eye the 10th of June, and I will let you know how that
goes..:) OH! I didn't answer the one question..Stickler's does different things
to different people..for Brennon, it's just his eyes.? There can be cases where
the person has all of the symptoms.. just when they're that little (like your
son) you might have a head start on things, knowing that he has it now.? I
didn't even know Brennon had a TINY cleft palette until he was 10! :( I'm here
if you need to talk, though, and my # is 757-768-5891.? Call me!! Talk soon,
Valerie


-----Original Message-----
From: peggreen13 <peggreen13@...>
To: sticklersyndrome@yahoogroups.com
Sent: Thu, 15 May 2008 7:02 pm
Subject: [Stickler Syndrome ] Questions about Stickler's, but can't figure out
yahoo messenger






Hi Valerie- I am sorry I can't figure out the Yahoo messenger. My son
is only 3 months old but has been diagnosed with Stickler's-I was
wondering how Stickler's has progressed in other people's children as
we had never even heard of it prior to our son being diagnosed- there
is no family history. We have been told of all of the different things
that could happen with his vision, hearing, joints, etc, and that he
will have to avoid sports. Has this been the case for Brennon? Thank
you for any insight you can give us.
-Peggy






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