Hi
My name is Jacqui. I have a 2 month old that 90% sure has Sticklers. my
husband, his brothers and sisters and father all have Sticklers. So most likely
my son does too. He already shows physical characteristics. My husband had bad
eye problem and joints. We dont know much about the joints but he can barely
walk at times. Hes only 29. He has had several retinal detachments, glaucoma,
lost sight in one eye and barely has any vision in the other. Everything that
can go wrong with the eyes has with him.
My 2 month old Samuel has a flat face and no nasal bridge. He had failed
the first 3 hearing tests. I took him for a BAER test and he is not deaf but is
not within normal hearing tones. He does have some hearing loss and they dont
know if it will get better. I was told to get some intervention and teach him
sign language. I am still checking on his eyes. So far, so good with his eye
sight. I take him in next month for a genetic test. Everyone has told me he
does have it. Im not sure but his bones pop all the time when I move him. I
dont know if its just because hes a newborn or what. It sounds like his dads
bones. LOL
I really need other people with Sticklers to talk to. I dont have it
myself but its just as hard for me. My entire in laws and family has it and I
live with it daily. I hate to see my husband suffer. we dont know much about
this. we are realitively new to this.

Jacqui



Lisa <schroder_lisa@...> wrote:
--- In sticklersyndrome@yahoogroups.com, "dspigener" <dspigener@...>
wrote:
>
> Hello, my name is Amy and we have a four month old daughter that
> was diagnosed with stickler syndrome. I would really like to talk to
> someone who is or has gone through this.
> >
> >
>Hi Amy, my name is Lisa, and i have a little girl who is now 4 years
old, who has Stickler syndrome and Pierre Robin sequence.
Would be happy to chat to you about anything, Kaitlyn had to spend the
first 3 years of her life in hospital, but is home now and doing really
well. She is still tube fed and we have been told that she probably
always will be, and she suffers with her eyes and ears. And has
arthritis in both her knees. I find that i have learnt far more about
medical science thani ever wanted to, but know that there is still an
awful lot to learn.
Lisa










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