Other families out there...

[Guest guest]

I have worked with 3 children with CHARGE in the last 6-7 years, in 3

different states. I do not believe that any of their families are on

the list.

Also, I know what Pam means. I recently saw a picture in the paper

for an engagement notice of a girl I went to high school with. She

had had a cleft lip and palate repair early in life and

talked " differently " (now I think she may have had a hearing

impairment too). I really don't know much else about her (we were

not friends, just aquaintances). When I saw the picture of her, it

struck me that she may very well have CHARGE--just something about

her features, and I think she may have a cranial nerve palsy too.

I just wish all of the families out there could find their way here

to get the benefits of this wonderful place!

Kate (PT in NY)

>

> Michele,

> this is so true!!

> I went to " Princesses on Ice " on Friday night with my god

children. As we were going in, there was a little girl in lovely

princess dress who was so clearly CHARGE and I did not know her. I

saw her parents, and her grandmother, but have never seen any of

them. My godchildren's mother poked me and asked if the little girl

had CHARGE ( I was proud of her for noticing and knowing!). I

EXPECTED to know them and I EXPECTED them to know me!! So...I fully

understand what you mean.

> pam

>

>

> RE: Re: Family In Tasmania

>

> Isn't it funny how we begin to think that we are CHARGE - and we

must

> include everyone, of course! It's like in our small town. I think

I know

> just about everyone. Til I meet someone outside my circle. Then I

realize

> there are many circles of people that I am totally unaware of.

Same here.

> We think we must know of every CHARGE family - until we find out

about and

> meet new people. Then we realize there are many out there who

aren't a part

> of our group.

>

>

>

> Of course, I think anyone involved with CHARGE should join us cuz I

can't

> see how this couldn't be beneficial for all. But - some people

don't have

> internet, some people don't have time, some people just aren't

interested.

>

>

>

> I'm glad to see how much we continually grow though.

>

>

>

> Michele W

>

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