pen-pals?

[badcheesemomma]

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there a community she could go to? She doesn't do the "chat" yet, although I'm positive she could. Thanks!

 

[badcheesemomma]

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there a community she could go to? She doesn't do the "chat" yet, although I'm positive she could. Thanks!

 

[badcheesemomma]

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there a community she could go to? She doesn't do the "chat" yet, although I'm positive she could. Thanks!

 

[robert321]

Starbright world. I don't remember a whole lot about it, but its through the Starlight Starbright Foundation or something like that, the website is starbrightworld.org if I'm not mistaken. After I was first diagnosed my clinic got me set up with them. It is a site for chronically ill children not necessarily just cf but several years ago there were a lot of cf patients on it, but I would say that a little over half were Crohns or UC patients because the UC website does advertising for them.
Its a community for only under 18 and everything is closely moderated. Thier chat has a paid moderator on it 24/7 and they were developing blogs etc. when I lost interest in the site several years ago (about the time I got active here <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I think it might be more targetted toward teenagers than the really young crowd but I think you should check it out. I really don't remember a whole lot more about them though, after I was about 16 I decided I was too cool for it and came over here

 

[robert321]

Starbright world. I don't remember a whole lot about it, but its through the Starlight Starbright Foundation or something like that, the website is starbrightworld.org if I'm not mistaken. After I was first diagnosed my clinic got me set up with them. It is a site for chronically ill children not necessarily just cf but several years ago there were a lot of cf patients on it, but I would say that a little over half were Crohns or UC patients because the UC website does advertising for them.
Its a community for only under 18 and everything is closely moderated. Thier chat has a paid moderator on it 24/7 and they were developing blogs etc. when I lost interest in the site several years ago (about the time I got active here <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I think it might be more targetted toward teenagers than the really young crowd but I think you should check it out. I really don't remember a whole lot more about them though, after I was about 16 I decided I was too cool for it and came over here

 

[robert321]

Starbright world. I don't remember a whole lot about it, but its through the Starlight Starbright Foundation or something like that, the website is starbrightworld.org if I'm not mistaken. After I was first diagnosed my clinic got me set up with them. It is a site for chronically ill children not necessarily just cf but several years ago there were a lot of cf patients on it, but I would say that a little over half were Crohns or UC patients because the UC website does advertising for them.
<br />Its a community for only under 18 and everything is closely moderated. Thier chat has a paid moderator on it 24/7 and they were developing blogs etc. when I lost interest in the site several years ago (about the time I got active here <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I think it might be more targetted toward teenagers than the really young crowd but I think you should check it out. I really don't remember a whole lot more about them though, after I was about 16 I decided I was too cool for it and came over here

 

[robert321]

And of course feel free to use me as a penpal via pm here. I wasn't dxed until I was 14, so I don't know what elementary school was like "with cf" so I might not be the best choice.

 

[robert321]

And of course feel free to use me as a penpal via pm here. I wasn't dxed until I was 14, so I don't know what elementary school was like "with cf" so I might not be the best choice.

 

[robert321]

And of course feel free to use me as a penpal via pm here. I wasn't dxed until I was 14, so I don't know what elementary school was like "with cf" so I might not be the best choice.

 

[badcheesemomma]

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a great learning experience for everyone (especially with the fund rasing and such). All her friends are understanding and great about the things she has to do (we have a lot of sleepovers). thanks for the website, I will check it out. She never gives us a hard time about doing anything, she just feels alone.

 

[badcheesemomma]

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a great learning experience for everyone (especially with the fund rasing and such). All her friends are understanding and great about the things she has to do (we have a lot of sleepovers). thanks for the website, I will check it out. She never gives us a hard time about doing anything, she just feels alone.

 

[badcheesemomma]

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a great learning experience for everyone (especially with the fund rasing and such). All her friends are understanding and great about the things she has to do (we have a lot of sleepovers). thanks for the website, I will check it out. She never gives us a hard time about doing anything, she just feels alone.

 

[ehtansky21]

I have a 6 1/2 year old...that would love to correspond!!! You can show your daughter our website, with pictures of the boys doing their treatments and stuff...this is a good post for that!!!

<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/05/day-in-life.html
">http://chasing-truth.blogspot....0/05/day-in-life.html
</a>
maybe they can e-mail back and forth and if they are interested after that, we can try to skype ???

heleadsmyway@cox.net

blessings,
missa

 

[ehtansky21]

I have a 6 1/2 year old...that would love to correspond!!! You can show your daughter our website, with pictures of the boys doing their treatments and stuff...this is a good post for that!!!

<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/05/day-in-life.html
">http://chasing-truth.blogspot....0/05/day-in-life.html
</a>
maybe they can e-mail back and forth and if they are interested after that, we can try to skype ???

heleadsmyway@cox.net

blessings,
missa

 

[ehtansky21]

I have a 6 1/2 year old...that would love to correspond!!! You can show your daughter our website, with pictures of the boys doing their treatments and stuff...this is a good post for that!!!
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/2010/05/day-in-life.html
">http://chasing-truth.blogspot....0/05/day-in-life.html
</a><br />
<br />maybe they can e-mail back and forth and if they are interested after that, we can try to skype ???
<br />
<br />heleadsmyway@cox.net
<br />
<br />blessings,
<br />missa

 

[joelleconlin]

i know that this was posted a while ago, but my 6 year old daughter is going through the same stuff. she would love to be able to email another child with cf. our email is joelleconlin@gmail.com
thanks!

 

[joelleconlin]

i know that this was posted a while ago, but my 6 year old daughter is going through the same stuff. she would love to be able to email another child with cf. our email is joelleconlin@gmail.com
thanks!

 

[joelleconlin]

i know that this was posted a while ago, but my 6 year old daughter is going through the same stuff. she would love to be able to email another child with cf. our email is joelleconlin@gmail.com
<br />thanks!

 

[Brinlysmom]

Hi there~
I would love for my 6 year old Brinly to have a pen pal too! We are having a hard time right now- we where in the hospital last Thanksgiving 2010 for PA and we are waiting for a hospital room right now 1/27/2011 for a chronic cough with green and blood phlegm. She is frustrated she is missing school- she loves school. We would love to meet someone going thru the tough times with CF.
please feel free to email me blythe.weston@tx.rr.com

 

[Brinlysmom]

Hi there~
I would love for my 6 year old Brinly to have a pen pal too! We are having a hard time right now- we where in the hospital last Thanksgiving 2010 for PA and we are waiting for a hospital room right now 1/27/2011 for a chronic cough with green and blood phlegm. She is frustrated she is missing school- she loves school. We would love to meet someone going thru the tough times with CF.
please feel free to email me blythe.weston@tx.rr.com