TEAM COJO’S GREAT STRIDES STORY
Meet Connor John (CoJo!)
Connor was born in August 2023, and after an emergency surgery on Day 2 due to meconium ileus, was diagnosed with Cystic Fibrosis.
After completing the procedure, his pediatric surgeon (the amazing Dr. Coln), told us (his parents) of his diagnosis. We had known by then that it was a possibility and that his mutations were of high severity, but hoped the healthy pregnancy indicated otherwise. In an instant, our hearts broke for our son. For his future of having to fight a disease every day of his life. Dr. Coln saw the heartbreak on our faces and stated, “This is not a death sentence. You can do this. There are a lot of other babies here that are worse off than this little guy. He’s going to be okay, I promise.” While our hearts still broke for Connor, and even more for our sweet NICU neighbors, we had faith in Dr. Coln’s words and immediately got to work and in “let’s do this” mode.
The reason Dr. Coln was able to say these things is largely due to the work of the Cystic Fibrosis Foundation. The Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.
We’re lucky that Connor was born in a time where there are much better treatment options. However, every day is still a fight just to feel okay. At his age, he’s currently not eligible for the newer treatments that will hopefully make a huge difference for his health. We’re patiently awaiting approvals for lower age groups, and of course, a cure.
So instead of just waiting, we fight. We march. We take Great Strides towards a better future for not only CoJo, but all those affected by CF.
LET’S GO!!!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.