acceptance of mito possibilities/ /'s cousin

March 21, 2000

Dear Friends, and especially ,

Your sharing with us about your cousin is definitely helping me in

" Redefining Hope " ! Staci has her follow-up appt. with Dr. Boles next

week, going over the latest test results and formulating a more precise

diagnosis. Staci's birthmom posted me a couple of months ago saying her

doctor wants to know exactly what Staci's diagnosis is... I posted her back,

paraphrasing some of what's in the parent's booklet on mito of the

Exceptional Parents articles. She'd told me she'd see if she could get off

work. Then, I explained a bit more, and gave her the link to Ken's website.

Let's just say that she was outraged at my suggestion that she consider not

having any more children at least until more of Staci's tests are in, since

there's a probable chance the mitochondrial/maternal DNA is affected and it

could be passed on again.... Her post included a term I hadn't read in so

long, and never have thought of in connection with mito: " tainted genes " .

Last year another doctor had told us Staci's mito was only due to nuclear

DNA problems... Ann and her sister were VERY relieved! We'd gotten together

once or twice a year until Staci was 2.5 years old. The last time we saw her

was Staci's joyful day in Children's Court, where she officially became our

daughter!

We still talked on the phone, and then by email. Ann said that seeing

Staci's handicap was too painful for her, filling her with guilt.

Please pray for Ann, and all of us who are struggling toward victory over

the " monster of mitochondrial disorders " . She can only take in as much

information at one time... acceptance is not guaranteed. Ann, her sister,

her mom, and pictures of her grandmother all have the " mito Cherub cheeks and

nose " . The last time we visited Ann, we took a picture of Staci seated next

to a picture of Ann at about the same age. Except for the signs of mito,

which we thought were CP at the time... They could be twins, or at least

first cousins.

10 more days of waiting... I do hope Ann comes with us to the appt.

Hugs to all...

Love,

P.S. I'm so wishing I could fwd 's post to Ann.... Acceptance can't be

forced.

<< wrote about her cousin::She could so relate this time! Now it scares

her but like she said its reality that we have to face. I just hope and pray

her daughter and mine never have to go through what I have been through!

>>

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