Before becoming a CF parent I had no idea what Cystic Fibrosis was. I had heard of it, & the need for a lung transplant. Then when Bodhi was born & had a bowel blockage caused by CF was I aware of the real situation. For the first 2 months of Bodhis life he had an Ostomy bag due to his bowel blockage which was able to be reversed leaving him with a scar on his abdomen always reminding us of his fight right at birth.
CF affects EVERYTHING!! All because of a simple gene mutation passed on from both parents.
Daily Bodhi takes around 10 medications. One of those medications is creon capsules. Pancreatic enzymes he has to take with every meal because his body will not absorb the nutrients without it. In a day he takes around 15 of those pills & has been since he was a newborn.
On top of all his medications he also does airway clearance. Which for him right now is 30 minutes of his Vest. What is a vest? It is a machine that shakes & vibrates against his lungs. It helps break up the thick clogging mucus produced in the lungs. This helps in aiding to prevent serious lung infections, but is not a cure. Cfers still get sick, still lung transplants.
Most recently Bodhi had to have sinus surgery, because of obstructions to his breathing. Thankfully surgery was a success & his breathing has improved tremendously. UNFORTUNATELY these obstructions most likely will come back requiring more surgery’s. But we take it one day at a time!
Join our team as a virtual or in person walker! Help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, 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.