Leon's Lineup: Our 4th Great Strides!
Hannah Deck
Fundraising for Cape Elizabeth Great Strides 2026
Hannah Deck
Leon's Little Victories
Every May, when I sit down to write this message, I’m given the incredible opportunity to reflect on the past year, how far we’ve come as a family and how far we’ve come as members of the cystic fibrosis community.
Day to day, life as a CF caregiver is simply life as I know it. But as we gear up for the annual Great Strides walk, I’m given the chance to step back and appreciate what each of those days has given us and ultimately, what has helped give us each of those days.
This year, I wanted to share some of the little victories that have been made possible because of the profound work of the CF Foundation and because of friends and family like you, who year after year come together to help us support their mission. That work has been at the forefront of medical innovation, including treatments like modulators that have defied so much of what I learned about CF just three and a half years ago when Leon was born.
To set the scene, this past fall Leon started preschool, opening the door to a whole new world outside our home and he is absolutely head over heels in love with all of it. Through his eyes, every little thing is just the most amazing thing. Running an errand to Dollar General might as well be a trip to Disney World.
Every May, when I sit down to write this message, I’m given the incredible opportunity to reflect on the past year, how far we’ve come as a family and how far we’ve come as members of the cystic fibrosis community.
Day to day, life as a CF caregiver is simply life as I know it. But as we gear up for the annual Great Strides walk, I’m given the chance to step back and appreciate what each of those days has given us and ultimately, what has helped give us each of those days.
This year, I wanted to share some of the little victories that have been made possible because of the profound work of the CF Foundation and because of friends and family like you, who year after year come together to help us support their mission. That work has been at the forefront of medical innovation, including treatments like modulators that have defied so much of what I learned about CF just three and a half years ago when Leon was born.
To set the scene, this past fall Leon started preschool, opening the door to a whole new world outside our home and he is absolutely head over heels in love with all of it. Through his eyes, every little thing is just the most amazing thing. Running an errand to Dollar General might as well be a trip to Disney World.
Being able to go to school, be around children his age, be exposed to everyday germs and have his body fight those germs without outside intervention all would have been considered the exception for someone with CF less than a decade ago. I remember once reading that the average person with CF could expect to miss a week of school every month. Leon hasn’t missed that much time all year.
At school, he has played in mud kitchens and sandboxes. He is currently growing his own fruits and vegetables in the shared garden. Experiences I thought he would never be able to have at this very last year. Heck, even something as simple as shared playdough was too dicey.
And this month, we will be re-testing his pancreatic function. Alongside the medical community, we are learning modulators have helped many with CF become pancreatic sufficient (even some who have been insufficient their entire lives). Think about how life changing it would be to no longer need medication just to eat.
Of course, the mission isn't over until there is a real cure for everyone with CF. While these advancements are nothing short of miraculous, many CF mutations are not eligible for modulators. And for those who are eligible, modulators are not perfect. CF still carries risks, and so do the treatments themselves. At three and a half years old, Leon still spends more than an hour every day doing therapy. We still live in a revolving door of blood draws, lab work, appointments and uncertainty.
But if Leon has taught me anything, it’s that the little victories along this journey are what bring us joy. They are what make life feel so full, so beautiful and so worth celebrating.
If you are able to donate or share our page, please know your support helps fund the research, treatments and hope that are changing what life with CF can look like, for Leon and for every person living with cystic fibrosis.
Thank you for helping make these little victories possible.
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