tag:blogger.com,1999:blog-401303964563152307.post1668370844920529507..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : What it's like to have two kids with cystic fibrosisEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-401303964563152307.post-35563503393559840272016-06-08T12:54:43.706-04:002016-06-08T12:54:43.706-04:00I had two kids with cf my oldest had a lung transp...I had two kids with cf my oldest had a lung transplant at 9 she just passed away she was 18. My other daughter is 14 and she also has cystic fibrosis. I know all to well how difficult it is to have two children with devastating illnesses. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-25763809725373796032012-05-30T20:25:50.861-04:002012-05-30T20:25:50.861-04:00I am glad that CVS is doing a fundraising campaign...I am glad that CVS is doing a fundraising campaign that helps people with ALS and CF.My grandmother died of ALS 12 years ago and my best friend has CF so this hits home for me. Thanks for postingKathrynnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-65114156316688606922012-05-30T19:57:06.344-04:002012-05-30T19:57:06.344-04:00Thanks so much, Marla, I fixed that typo. Rachael,...Thanks so much, Marla, I fixed that typo. Rachael, I am glad Brenda, Lucas and Hannah inspired you. And Julia, YES, and WOW. I'm posting about it tomorrow!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-18656438300724378502012-05-30T19:57:05.168-04:002012-05-30T19:57:05.168-04:00Thanks so much, Marla, I fixed that typo. Rachael,...Thanks so much, Marla, I fixed that typo. Rachael, I am glad Brenda, Lucas and Hannah inspired you. And Julia, YES, and WOW. I'm posting about it tomorrow!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60483134021130133552012-05-30T18:07:38.458-04:002012-05-30T18:07:38.458-04:00I don't have kids yet, but found out last fall...I don't have kids yet, but found out last fall that I'm a carrier of CF. Having a kid with CF is the outcome that totally frightens me, as well as the decisions I'm going to have to make if the man I want to have children with also turns out to be a carrier. It's nice to see articles that show people really can cope with it. Thanks for posting.Rachaelnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-59308575145582752572012-05-30T12:34:30.776-04:002012-05-30T12:34:30.776-04:00http://jezebel.com/5914179/your-morning-cry-boy-wi...http://jezebel.com/5914179/your-morning-cry-boy-with-cerebral-palsy-runs-race-with-a-little-help-from-his-friends<br /><br /><br />You need to see this.Julia O'Cnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-71650821861975548842012-05-30T10:55:33.526-04:002012-05-30T10:55:33.526-04:00There is some inaccurate info in the article.
The ...There is some inaccurate info in the article.<br />The 'miracle' drug that has been approved for CF is KALYDECO™ and it is for people with the G551D mutation.Marlahttps://www.blogger.com/profile/11663237205576199361noreply@blogger.com