Our story
Late in our first trimester we found out the possibility of our son having Cystic Fibrosis. We spent the rest of my pregnancy in a game of probabilities, odds and numbers, overanalyzing, rationalizing, you get the idea. Exactly a week after Leon's birth we got the call with his newborn screen results. The very next morning we met our local CF Clinic and the rollercoaster ride began. A ride I also knew, still know in many ways, we hadn't even gotten on, or maybe we've just been buckled in and they're checking the straps to make sure we're ready to go.
I've broken down while preparing the medicine he needs to eat as he cries from hunger, so envious of those who can just feed on demand.
We've obsessively weighed him, celebrating every half ounce as he hovered in the fifth percentile borderline failure to thrive.
We've remained entirely isolated from loved ones to protect and preserve his lungs, our only contact with the outside world being doctors appointments and the occasional anxiety-ridden trip to the grocery store. The tears almost automatic every time I'm reminded he hasn't met his cousin.
Knowing my son's life depends on a series of medications, treatments and machines has lost me more hours of sleep than I can count, paralyzed me with fears, unable to decipher the rational from irrational.
Family and friends tell you everything happens for a reason, how strong you'll be because of it, it will get easier, he doesn't know any different. I'm not sure about all that but what I do know is we are lucky we've never had to worry about access to the best care and most innovative therapies. We've felt confident in the work towards a cure to give our son a better more normal future. We've been gifted a community of people overflowing with support and resources and ears to listen that understand in a way others can't and a group of healthcare professionals that love our son as their own. All of that is owed to the amazing work of the CF Foundation. The smile and cheeks on this once fifth percentile baby is all the proof you need.
- Hannah
Join our team
Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: