Jump to content

Raising Money for Cystic Fibrosis


Recommended Posts

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  I will update their photos when I get a second since the ones below are a bit outdated.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.

5kqesl.jpg

seceoi.jpg

30xaa0y.jpg

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 by aviolentworld
Link to comment
Share on other sites

  • 4 weeks later...

  • 2 weeks later...
  • 3 weeks later...

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.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×

AdBlock Detected

spacer.png

We noticed that you're using an adBlocker

Yes, I'll whitelist