That was awesome, Jacqui!!! I agree that you have to let them be kids.? That's
first and foremost.? I will support Brennon in almost anything he does, and with
a strong faith in God, we can show our kids that it's not as bad as it could
be.? Brennon wasn't even diagnosed with it as we didn't find out about it until
he was 10, and his Dad got diagnosed with it, (my ex) at the age of 32.? Funny
thing is, that when Brennon was? a newborn, I had the amnio done and nothing
showed up as abnormal..ripley's believe it or not.? He has a cleft palette but
not that noticable..it's really not that bad, but bad enough. He hasn't even had
that much joint pain until now..he's really growing, and I think that started,
too, this last surgery last year, and they put him on Steroids..he went from a
size 16 boys to a size 38 men's in like 6 months..unbelievable! Anyhow, I'm here
to tell you, too, though, that our Stickler's kids are more mature than any
other kid their age.? They have to overcome so much and yet, smile bigger than
the sun.? It amazes me and their stregnth is what keeps me going.. ;-) Love
ya'll, Val


-----Original Message-----
From: Jacqui <momofbksa2001@...>
To: sticklersyndrome@yahoogroups.com
Sent: Wed, 21 May 2008 11:15 am
Subject: Re: [Stickler Syndrome ] Questions about Stickler's, but can't figure
out yahoo messenger






Hi Peggy

My name is Jacqui. I have a son who is turning 2 on June 8. He was diagnosed
with Sticklers at birth. We got the official dx when he was about 1. We knew
because his father has it.
Samuel was born with the facial characteristics of Sticklers. He also failed the
newborn hearing test. We then took him for further hearing testing at the
childrens hospital. He didnt pass there either. We found out that he has a mild
low frequency hearing loss that is sensorineural. Which means its permenant. We
have frequent hearing tests. Although he has a hard time with low tones, he was
a little slow talking. Now that hes about 2, he is starting to talk more. Hes
not where he should be but I get lots of support and help through various
organizations for him.
He has joint problems since about 1 month old. He has developed joint pain and
now on Naprosen for pain. He has grown up very well though. Hes active and
happy. He loves everything and everyone. Hes such a lovable baby.
In Jan of 08, Samuel kept running into the walls and tripping over the carpets
and toys and whatever else that was around. I took him to the eye doctor and he
went from a +1 to -4 in both eyes. He wears glasses now. He still has a hard
time but figures things out. I took him to a retinal specialist 2 hours away
from me. That doctor told me the vitrius jelly in his eye is starting to thin
out. This is not good cause it will end up that the inside of eye would start
jiggling around and can cause some problems. Hes in for some bumpy roads ahead.
we all are.
Samuel is smart. He has no idea he has problems. He just loves everything.
I know that in the future he will have more problems and he is in the
pre-arthritus stage at 2. Im sure his bones will deteriorate sooner than normal
for Sticklers.
It just proves that every person has different issues with Sticklers.

One thing in common though, the Stickler kids are so well balanced. ITs hard to
go through things like that and not understand. Somehow they are happy and
thrive very well.
Val's son Brenon is a great kid and doing great things in his life. It does help
when the parents allow them to be kids though.
I hope we can all offer some support to eachother. Val has done wonders for me
too. She has offered me some words of wisdom and inspiration.
THere are not very many children especially younger toddlers that has Sticklers.
I dont know anyone else outside of this group and my ex's family who even knows
what Sticklers is. Our doctors dont know much more than me.

Welcome!
Jacqui and Samuel


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