The Cystic Fibrosis walk is coming up and I wanted to share just how much all your love and support has done through the years:
Walk letter from 2018- " Brendon has endured many years of pure hell, but this year leaves us in total disbelief. He spent over 3 months in the hospital on 7 different occasions (Pleural effusions, Pleurisy, Pneumonias, Exacerbations, Thoracentesis, Thoracic surgery, chest tubes, port placement and a Lupus Diagnosis. A year that had Hope & Fight leaving his eyes"
Walk letter today-Brendon has had "0" hospital visits since starting Trikafta in December of 2019. This drug has saved his life. His lung function was in the 20's and months away from being put on a lung transplant list. His lung function is now in the 40's & instead of spending his life in hospital rooms, he is thriving. He got his drivers license, started a job and is dating. He is actually looking forward to a future something he has never dared dream.
YOU DID THIS
There just isn't a word existing that could express my love & appreciation to you all. The truth is he is still at risk. The median age of survival is 40(has gone up 10 years since Brendon's diagnosis) But 40 is not a # a mother wants to hear in regards to her childs mortality. A CURE is needed Brendon will be 28 this year a fete the books said he would never reach. So I will ask again for your help.
The walk is Sunday May 15th at Holtsville Park & Zoo. Our team is Brendon's 100th Birthday. IF you would like to walk and help raise money we always love new team members please let me know. If you can't walk you can still help by donating to help find a cure and add stronger, longer tomorrows to all those suffering with CF. No amount is too small please don't scroll past we need your help desperately!! Please click on the link to donate online:
Or checks can be mailed to:
188 Grove Street
Port Jeff Sta., NY 11776
Please make checks out to Cystic Fibrosis Foundation
Last but definitely not least, I would like to say Thank you. Thank you to all of our family and friends who have helped Brendon and I. We love and appreciate all of you!
We Love you all very much
Chris & My Amazing Fierce Fighter Brendon