Jacqui,

Thank you so much for responding to my post.

Sorry to hear that your son has Stickler's.
I see some of his symptoms mirrored in my son. Though
he developed fully mature cataracts by the age of two,
he has not encountered retinal issues.
In his case, the lenses had to be removed and glasses
were prescribed.

I'm curious. Has your son had genetic testing and is
there any evidence of other symptoms?

My son is 26 now and is complaining of aches in his
joints, so we think it may be the onset of arthritis.

I hope that your appointment with the retinal
specialist goes well.

I'm also sorry to hear that your husband has the
syndrome and that it's greatly affected his sight.

I am happy to hear that you intend to read my memoir.
People have found it very inspiring and helpful at the
same time.
Let me know when you acquire a copy and do keep me
posted on your son's progress!

God bless,
Mario



> Jacqui <momofbksa2001@...> wrote: Hi
> Mario
> Nice to meet you. I am Jacqui. I have a baby that
> has Sticklers. He will be 2 years in June. Samuel
> was born with Low Frequency hearing loss and joint
> problems that has lead to Arthritis. He now has
> myopia and suspect retinal problems. We see the
> retinal specialist in a couple weeks.
> When I get some money, I will buy your book and read
> it. It sounds so great just from what I read on your
> links. Its not like there are very many of us in
> this Stickler's group. Samuel's father has Stickers
> also. He has already lost one eye and majority of
> the other one. Other than the family and this group,
> I dont know anyone else with Sticklers.
>
> God Bless
> Jacqui
>
> My son, Shaun, was diagnosed with Stickler's
> Syndrome.
>
> He had cataracts, hearing problems, a cleft palate
> of
> the soft tissue, and very maloccluded teeth,
> requiring
> him to wear braces. At age thirteen, he developed
> scoliosis that progressed to a 50% curve and needed
> surgery for it.
>
> My name is Mario S. Fedele, and I've written a
> memoir,
> titled "God's Gift," to chronicle his hardships.
>
> If anyone would like to discuss our case, please
> drop
> me a line!
>
> Mario S. Fedele
>
> <a href="http://lilypie.com"><img
> src="http://by.lilypie.com/e6T6m7.png" alt="Lilypie
> 6th to 18th Ticker" border="0" width="400"
> height="80" /></a>
>
> Blaine 14 Incoming Freshman
> Kelly 13 Freshman also....ADHD, OCD, ODD crazy kid
> Shelby 11 No problem child
> Aliya 8 glad she isnt the baby anymore
> Samuel 1yr(June) Sticklers Syndrome, hes a great
> baby and I would never want any other baby.
>
>
> ---------------------------------
> Be a better friend, newshound, and know-it-all with
> Yahoo! Mobile. Try it now.
>
> [Non-text portions of this message have been
> removed]
>
>
>
>
>
>
> ---------------------------------
> Be a better friend, newshound, and know-it-all with
> Yahoo! Mobile. Try it now.
>
> [Non-text portions of this message have been
> removed]
>
>


Mario S. Fedele
God's Gift - A touching memoir of overcoming insurmountable odds!
http://www.freewebs.com/mario5o/
http://www.champagnebooks.com/
http://www.myspace.com/mario5o
http://www.bestbookdeal.com/book/compare/1897261888/


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