He is the most kind, inquisitive, independent, social butterfly on the planet and he has a rare disease called cystic fibrosis.
As truly perfect as he is, the cells in his body do not work perfectly.
His cells are not able to process chloride—causing the mucus in his body to turn to superglue, sticking to and clogging his organs unlike the rest of us whose mucus is like oil in a well oiled machine.
This sticky mucus that takes up residence in his body makes it a perfect home for bacteria and viruses to grow and wreak havoc.
Alright, enough about the boring details. It’s been exactly a year since this term “CF” has been a part of our everyday lives.
And guess what? While we were trying to wrap our heads around this diagnosis (still working on that…) BEAUTIFUL life continued as normal.
Petey is a completely happy and healthy (GRATEFUL) baby who is hitting his milestones with a vengeance and enjoying learning about the world. We all go to sleep and wake up with huge smiles on our faces. We just love being mama and dada to our boy.
So what’s the plan?
Keep. This. Kid. Healthy.
It’s no small task. But his team of doctors, family and friends won’t back down from a challenge. Our defensive strategy includes things like:
- Avoid CF “red flags” - individuals with respiratory illness symptoms, ponds/puddles, mud/dirt, bath toys, hot tubs, sand boxes, greenhouses, etc.
- 1 hour of respiratory therapy a day. 365 hours this year
- 20-30 pills of digestive enzymes a day (to do the job of Petey’s pancreas — absorbing the nutrients from his food and helping with weight gain)
Fun fact: One of my favorite CF traits about Petey is when you kiss him he tastes like a yummy pat of salted butter (I think it’s our dog Skye’s favorite part too!)
Petey’s future is so bright thanks to the incredible research and medical advancements that have been achieved in the last few years. He will live a near normal life. Your support means everything to us. Let’s make CF stand for CURE FOUND.
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.