and Staci can equal that! Re: what are the odds of THIS?!

March 24, 2000

Ruth, this is just further proof that mito is " grossly underdiagnosed "

Here in Long Beach we've also got schoolmates/ classmates both having mito.

and Staci are in the same Special Ed. Pre-K/K class. 's

mom and I both checked out the other's child, trying not to stare. After

about 5 mins, when the kids were settled in, we asked:

" Does your child have mito? " " Yes, does yours? " " Yeah, I thought so. "

You think that's wild? Last summer we went to a 3-D IMAX show on " Mark

Twain's Mississippi " . They showed still pictures, with great narration. At

first, I thought I just had " mito on the brain " . His children definitely had

" the cherub/mito nose and cheeks " . I elbowed when the narration told

about his children. They, plus his wife, ALL died early deaths; his wife in

her 20's, 3 of his 4 children before they were 12. His favorite daughter was

the only survivor. She had seizures. One morning while he was asleep, she

had a seizure while taking a bath, and drowned. Sure sounds like mito to

me.

This is a group of disorders I wouldn't wish on anybody, but I am hoping

our ranks do enlarge, just by people with it being properly diagnosed.

As the UMDF slogan is, we are eternally

" Redefining Hope " .

Hugs, Kt aka

P.S. there are at least 5 or 6 other kids with mito that are " regulars " at

Children's Hosp., Long Beach, CA. One was in ER same time Staci was.

Kt

In a message dated 03/24/2000 6:29:55 AM Pacific Standard Time,

hilandgang@... writes:

> Guess I was just a little SHOCKED to discover that two kids in the same 5

> mile radius have mito problems.....really brought home the fact that this

is

>

> NOT a rare disorder, but rather a rarely DIAGNOSED disorder!!

>

> ruth

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