aviolentworld Posted March 29, 2017 Share Posted March 29, 2017 (edited) EDIT - Posting this very late this year. I bumped the page from last year and updated the info below about my girls and their diagnosis. I will update their photos when I get a second since the ones below are a bit outdated. Thanks for taking a look. That time of the year again. My Family walks at the Cleveland Zoo every year and raises money to help fight this terrible disease. Scroll down a bit for some info about my girls and learn about CF and what my girls have. Some pics and newest update below for those that are interested. Every year our family walks to raise money for the cystic fibrosis foundation. At the age of one, we found out that our twin daughters have a diagnosis called CRMS or CFTR related metabolic syndrome. What is CRMS ---> https://www.cff.org/What-is-CF/Testing/CFTR-Related-Metabolic-Syndrome-CRMS/ They carry one classic mutation and another variable mutation for Cystic fibrosis. Their most recent sweat tests in 2017 revealed that the amount of salt in their sweat was high enough to diagnosis cystic fibrosis. What they haven’t developed at this time is clear cut symptoms, so they’ve remained under the diagnosis CRMS. We are so unbelievably grateful for their health. We luckily do not have any new issues to report this year. The pictures attached are from 2017 when the girls took their last sweat tests and when they learned how to do airway clearance for when they are sick. What their diagnosis means is still quite unknown to us. They may continue to lead normal lives or they may begin to develop symptoms of atypical CF as they get older. In the meantime though, our eyes have been opened to how absolutely terrible this disease is and we want to help bring a cure to those who are suffering from CF. Your donation can help develop life-saving curative treatments and medications. ANY donation is welcome and VERY appreciated. Thank you!!! Link to donate below http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1774452&pg=personal&fr_id=6904 Edited April 29, 2018 by aviolentworld somethingvinyl and KingTacoMunster 2 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 22, 2017 Author Share Posted April 22, 2017 Friendly reminder for those that want to donate to a great cause. somethingvinyl 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 30, 2017 Author Share Posted April 30, 2017 weekend bump. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 4, 2017 Author Share Posted May 4, 2017 (edited) a couple more weeks until my walk. thanks to anyone that has donated so far. Edited May 4, 2017 by aviolentworld Quote Link to comment Share on other sites More sharing options...
Dunc Posted May 5, 2017 Share Posted May 5, 2017 I will donate here soon. We have a good friend with a 12 year old daughter with cf. It really is a terrible disease. You have two beautiful little girls man, my thoughts and prayers are with your family. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
somethingvinyl Posted May 6, 2017 Share Posted May 6, 2017 Done! aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 14, 2017 Author Share Posted May 14, 2017 alright guys and gals one more week until my walk. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 18, 2017 Author Share Posted May 18, 2017 just a few days left. just a few days left. Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted April 29, 2018 Author Share Posted April 29, 2018 bumping for a new year. Quote Link to comment Share on other sites More sharing options...
somethingvinyl Posted May 1, 2018 Share Posted May 1, 2018 Not much, but I donated $10 again this year. Your daughters are so precious. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
Dunc Posted May 1, 2018 Share Posted May 1, 2018 I put $10 also. Wish I could do more but tax season killed me. aviolentworld 1 Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 1, 2018 Author Share Posted May 1, 2018 (edited) 20 hours ago, somethingvinyl said: Not much, but I donated $10 again this year. Your daughters are so precious. 6 hours ago, Dunc said: I put $10 also. Wish I could do more but tax season killed me. Thanks a lot you guys. Edited May 1, 2018 by aviolentworld Quote Link to comment Share on other sites More sharing options...
aviolentworld Posted May 18, 2018 Author Share Posted May 18, 2018 Friday bump. Walking tomorrow. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.