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Re: Barb (Matt's mom)

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If you would like to have some of my kids or others on this list write to

Matt please send me your address on my personal e-mail address

(honeybear50317@...) I would like to get a list of kids' addresses so

different families can write each other. Mitokidsandsibs (kid's support

group) is also started and if he wants to be a part of it let me know.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, chronic vomiting...

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: Child pen pal idea/support for our kids (anyone's kids

interested???)

> Hi Darla, I spoke to my son Matt age 8, and he says you have a great

> idea. He really does not have any close friends, and hasnt yet met

> any other child with mito,(hopefully he will try MDA camp in the

> future), therefore has no peers that would really understand what he

> goes through day in and day out, and would really appreciate making

> friends who lets say " the shoe fits " too!!! Let us know if you get

> this going or if you need any help getting this going, we'd be glad

> to help. Barb: mito myopathy, and mom to Matt: MERFF

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

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