#fightlikelila
Lila Jones
Lila Jones
Lila is eight years old, and she is a force of nature.
She skis Nordic trails, dances ballet, creates breathtaking art, and lights up every room she walks into. She is vivacious, theatrical, strong, and completely unstoppable — and she has cystic fibrosis.
Lila was diagnosed at age three, after being missed on her newborn screening by just .01%. CF is a genetic disease — her brother Gus does not have it, and that is not lost on us for a single day.
For five years, her days began and ended with up to 40 minutes of airway clearance treatments — twice a day, every day, 365 days a year. Winters brought respiratory infections. Her pancreas required constant monitoring and strict enzyme management as she grew. She did all of it without complaint, because that’s who she is.
Then came Trikafta…
This revolutionary medication treats CF at the cellular level — not just the symptoms, but the underlying cause. For Lila, it has been nothing short of a gift. Her daily treatments are now as-needed rather than mandatory. Her growth is right on target. Her spirit, already larger than life, has only grown. The research that made Trikafta possible didn’t happen by accident — it happened because of relentless funding, science, and hope. The Cystic Fibrosis Foundation made it possible.
What you might not know is that every cartwheel, every leap across the dance floor, every song belted at the top of her lungs, every jump on the trampoline — it all matters. Exercise is medicine for Lila. Keeping her lungs strong and active is a non-negotiable part of her daily life, and lucky for us, she has never needed much encouragement. Movement is just who she is. We build our days around it, and we are grateful for every single one.
This year, Lila and I are participating in the 65 Roses Race together — logging walks, runs, ski miles, and maybe even a swim or two. As her mother, I spend 365 days a year logging the miles, the memories, and the milestones we share. Every step I take is a step I once wasn’t sure I’d get to take with her.
We are asking you to join us.
This isn’t just for Lila. It’s for every person with CF whose genotype hasn’t yet been reached by the drugs that have already changed lives. It’s for the next breakthrough. The next family. The next child who deserves a future without limits.
Give what you can. Cheer us on. And remember — #untilitsdone.
She skis Nordic trails, dances ballet, creates breathtaking art, and lights up every room she walks into. She is vivacious, theatrical, strong, and completely unstoppable — and she has cystic fibrosis.
Lila was diagnosed at age three, after being missed on her newborn screening by just .01%. CF is a genetic disease — her brother Gus does not have it, and that is not lost on us for a single day.
For five years, her days began and ended with up to 40 minutes of airway clearance treatments — twice a day, every day, 365 days a year. Winters brought respiratory infections. Her pancreas required constant monitoring and strict enzyme management as she grew. She did all of it without complaint, because that’s who she is.
Then came Trikafta…
This revolutionary medication treats CF at the cellular level — not just the symptoms, but the underlying cause. For Lila, it has been nothing short of a gift. Her daily treatments are now as-needed rather than mandatory. Her growth is right on target. Her spirit, already larger than life, has only grown. The research that made Trikafta possible didn’t happen by accident — it happened because of relentless funding, science, and hope. The Cystic Fibrosis Foundation made it possible.
What you might not know is that every cartwheel, every leap across the dance floor, every song belted at the top of her lungs, every jump on the trampoline — it all matters. Exercise is medicine for Lila. Keeping her lungs strong and active is a non-negotiable part of her daily life, and lucky for us, she has never needed much encouragement. Movement is just who she is. We build our days around it, and we are grateful for every single one.
This year, Lila and I are participating in the 65 Roses Race together — logging walks, runs, ski miles, and maybe even a swim or two. As her mother, I spend 365 days a year logging the miles, the memories, and the milestones we share. Every step I take is a step I once wasn’t sure I’d get to take with her.
We are asking you to join us.
This isn’t just for Lila. It’s for every person with CF whose genotype hasn’t yet been reached by the drugs that have already changed lives. It’s for the next breakthrough. The next family. The next child who deserves a future without limits.
Give what you can. Cheer us on. And remember — #untilitsdone.
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