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Does anyone on this list know of a support group for CHARGE syndrome in
the states of Oregon or Montana?
Anyone know of programs for CHARGE kids in these states?
Anyone with personal experience with a CHARGE syndrome child?
Thank you
Deb L

Tia Leschke

At 02:47 PM 11/11/01 -0700, you wrote:
>Does anyone on this list know of a support group for CHARGE syndrome in
>the states of Oregon or Montana?
>Anyone know of programs for CHARGE kids in these states?
>Anyone with personal experience with a CHARGE syndrome child?

I can't help you, but now you've got my curiosity going. What's a CHARGE
syndrome child?
Tia

Tia Leschke leschke@...
On Vancouver Island
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It is the answers which separate us, the questions which unite us. - Janice
Levy

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> I can't help you, but now you've got my curiosity going. What's a
> CHARGE
> syndrome child?
> Tia

CHARGE is an acronym for a set of birth defects, the letters coming from
some of the most common features.
C is for coloboma ( cleft of the eyeball ), causing vision loss or
blindness and cranial nerves a kind of facial palsy, swallowing problems,
nerve damage, etc.
H heart defects
A artresia of the choanae, (nose and throat passage
deformities)affecting breathing.
R retardation of growth development
G genital and urinary abnormalities
E Ear abnormalities and hearing loss.

There are usually other problems but these are the most common. It is
genetic.
It occurs in about 1 in 12000 births, affecting all races, boys and girls
equally.

A little boy with CHARGE syndrome may be coming to live with us. I'm
taking a crash course. He's seven and has no effective way to
communicate that his care givers now can understand. ( I don't know why
he doesn't sign, and since he's deaf, doctors may have incorrectly
diagnosed mental retardation. ) He's been in the hospital most of his
young life. Unschooling will be the way to go as the ps system has said
they won't take him. He was described to us as having severe behavioral
problems. We're scrambling to learn as much as we can. I'm finding a
great deal of information actually, just wondered about personal stories.

Thanks,
Deb L