Re: Laurie

[Guest guest]

If you still wish your children to be a part of the penpal group please

send me your address to honeybear50317@... and/or they can join the

Mitokidsandsibs support group by sending me their/your e-mail address.

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,

> When I read you idea, I got so excited. I have 4 children Abby (7),

> Rebekah(5)-with PDCD or PDH(depending on which doctors termed

> it),(3) and Arielle(1)who is now going through a series of

> testing and is deaf in her right ear and has very low muscle tone.I

> know my oldest child Abby, who is OK, would love someone her age or

> close to her age to talk to. She goes through alot and I have always

> wished there was a sibling support group out there and I hope your

> idea takes off. So please let me now what I have to do to get things

> started. Hope to hear from you soon. Take care, Laurie

> We live in Halifax, Massachusetts

>

>

>

> > A recent post prompted me to act upon something I have been

> considering

> > for a while now. I have up to 5 children that would love to write

> to other

> > kids (with Mito or siblings of Mito affected kids) to develop

> relationships.

> > I think it would be neat to put together a list of interested

> kids, their

> > ages, where they live, and get many of our kids connected. We

> have this

> > support group to help us deal with the issues we face daily with

> Mito, but

> > what about our kids??? I know my kids have a lot to deal with

> emotionally

> > and the affected one, physically. Anyone interested let me know

> and I will

> > organize the group that wants to develop relationships. If the

> interest is

> > large it could later possibly develop into an e-mail support group

> for kids,

> > BUT I honestly don't encourage my kids to be online too much.

> I know

> > sib-kids e-mail group is a group for siblings of kids with health

> issues but

> > it wasn't a good fit for my kids and it mostly had one line e-

> mails that

> > added up to way too much of a pain for our family. But I know for

> our kids

> > it would be great to write letters, send e-mails, possibly phone

> calls, to

> > connect and make relationships with other Mito affected kids or

> siblings.

> > LET ME KNOW WHOSE INTERESTED!

> > For starters, we live in Des Moines, Iowa and my kids are:

> > Luke 16

> > Leah 14

> > Rachael 12

> > Isaac 10

> > Tirzah 08

> > *Asenath (4) Kezia (3) Marquis (2) and

> Zipporrah (10

> > months) These guys are probably too young to do much, but if

> interested

> > still let me know. Us moms could write little notes with stickers

> or

> > something to the toddler/pre-school aged kids.

> >

> > Darla: mommy to

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

> tube,

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

> vomiting...

> > Zipporrah (10 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 (7), Kezia

> (3), &

> > Marquis (2) (some with Mito symptoms)

>

>

>

>

>

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

>