Mitokidsandsibs (new e-mail group for kids/teens!)

[Guest guest]

Mitosibsandkids

go to: http://groups.yahoo.com/group/Mitokidsandsibs for the home

page or go to www.yahoogroups.com and ask to join a group. Then find or

type group name in to join.

Hey guys! I decided to start this group up at www.yahoogroups.com for

our affected Mito kids/teens, their sibs, relatives, or friends. I will

strictly monitor the site so only approved kids will have access as well as

only approved e-mails will appear on the site to avoid any kids or e-mails

that may be inappropriate. I know that I personally do not want my kids

exposed to bad language or other inappropriate behaviors and know you

wouldn't either. I hope this site will provide friendship and lots of

support to our kids dealing with Mito. Our kids have a lot to deal with,

dealing with Mito themselves, seeing their siblings/relatives/friends

suffer, and not necessarily knowing they are not alone. Hopefully this

group will help our kids to develop good friends and a place to go to

discuss their hurts and have an understanding friend. Please feel free to

ask any questions you may have. I plan to have several of my kids sign up

today and post a first message. Hope to see some of your kids there!

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

If you figure that out, let me know. I don't think there is a way...maybe you could just send out a monthly email to this list and have them email you privately if their child wants to be invvolved and then you will only have to send invites once a month or so.

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!

[Guest guest]

Yep! I set it up that way from the beginning. I am just trying to figure

out how people's children from this group join it other than by my

invitation.

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)

Re: Mitokidsandsibs (new e-mail group for kids/teens!)

> Darla

>

> Just wanted to give you a heads up...I think you can go in and change it

> if

> you want to. You can make the group not only private but by invitation

> only...if you do this then no one can find it. You could just

> periodically mention

> it on this list and see if anyone's kids want to join and then send them

> the

> invite. I operated a list like this. The nice thing is that any personal

> information can not be found by strangers or anyone trying to find

> you...which

> would be an added safety for the kids and thier sibs. You may have

> already done

> that or think thats paranoid but i thought I would give you the option.

>

> I think its a grand idea!!!!

>

> deb...mom to three great kids and wife to one amazing guy!

> http://www.lifeofloveproject.org/

> http://www.heartliftersgallery.com/

> Crazy Lizzies!! PURSES!

>