bbuechler

Updated Sep 15

💜💜cystic fibrosis awareness shirt💜💜

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Both my daughters have cystic fibrosis and this year for the annual walk we teamed up with 3 other kids in our town to raise money for the cystic fibrosis foundation to help find a cure for this genetic disease! We chose to do an awareness shirt for our team Cyster Warriors! All profits from these shirts will go to the foundation!! Our walk is May 20th!! We have adult large and extra large left. If there's a different size you'd like I'm sure I can get it! Thank you! 💜💜💜

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mjh418 and 4 others like this

13 Comments

brandiecook My son is 16 yrs old with CF, he is currently on the list for a double lung transplant. Many prayers to you and your family!!

Sep 15Reply

bbuechler @brandiecook Thank you! I pray he get new lungs very soon!!

Sep 15Reply

bbuechler @brandiecook What are his mutations if you don't mind me asking?

Sep 15Reply

brandiecook @bbuechler DF508

Sep 15Reply

brandiecook I also have a daughter, she is healthy. I want to have her tested for the gene, when she gets older.

Sep 15Reply

bbuechler @brandiecook my youngest is ddf508 but my oldest is df508 & 5t-12tg. I had her genetic tested after a borderline sweat test last fall right before turning 8 and that's how I found out! She's always been healthy besides the allergies and stuff. They even have different dads so I never expected this!

Sep 15Reply

brandiecook @bbuechler my 2 have different dad's also. My son was diagnosed at 3 months, but that was b4 they started testing as part of a new born screening. He has had a pretty tough 16 years, but this past 3 have been the toughest!! We were told Nov 2015 it was time to start the transplant eval, he has been actively listed for a little over 3 months now. We live 230 miles from our new CF clinic and transplant hospital.

Sep 15Reply

brandiecook We will have to relocate when we receive the call for 3 to 6 months depending on his recovery from surgery.

Sep 15Reply

bbuechler @brandiecook That's far! I will definitely keep you all in my prayers!! Stay strong 😘 I actually get to attend the conference in Indianapolis this year! I can't wait to see what the future hold for people with cf!

Sep 15Reply

brandiecook @bbuechler I've never been to a conference. Not sure if you have tried or you have the vibralung, but it's pretty new for CF airway clearance. My son absolutely loves it, he was using the vest till this past March.

Sep 15Reply

bbuechler @brandiecook No! I've never heard of it! I'm going to have to research that! My 2 year old has a vest but my 8 year old is so mild she doesn't have one yet and hopefully won't for a long time.

Sep 15Reply

brandiecook @bbuechler I pray for that also, the longer they can go with out the better!! Yes, check out the vibralung, your little one might be to young right now, but it could be a option in the future for both of them, it uses sound waves to break up mucus.

Sep 15Reply

bbuechler @brandiecook I actually just googled it! Definitely a possibility in the future! Thank you!

Sep 15Reply