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

[Guest guest]

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

[Guest guest]

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)

[Guest guest]

Darla,

My son Josh said he would be interested. He is 10 and right now we are still waiting to hear what his diagnosis is. Thanks for coming up with the idea!!

DawnDarla Klein wrote:

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 toAsenath (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. __________________________________________________

[Guest guest]

I hope this takes off again. We did this once before for kids to write to

each other. I know some kids get so busy that they forget to write or they

aren't sure always what to write. My boys get excited about emails; but

aren't very good about writing back. They need " coaching " from me on how to

write a good letter. It is so easy for us as we are on line so much and

corresponding to each other. I believe Deb had a good suggestion in their

own site on yahoo. That way they won't get mixed up with all of our standard

emails. Just a thought.

Nerenhausen

mom to Leah and also and

kestrelclan wrote:

> 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.

>