My Story…
I'm running the Falmouth Road Race for CPN again this year! I'll be running with our son, Jeremiah (age 14), who I will never be able to keep up with! My husband Chris and our son, Seamus (age 11) will be watching and cheering us all on. As a Pediatric Pulmonologist at Boston Children's my clinical and research focus is rare diffuse lung disease in children, so CPN has helped me immensely in caring for my patients.
To make this race even more meaningful, I will be running in honor of Bubba Young-Whitworth and his family. I had the privilege of meeting Bubba's amazing mother Blair recently and she shared the following about her beloved son :
"Bubba Young-Whitworth came into this world with a rare neurological condition, but that never defined him. What truly defined Bubba was his joy, his strength, and the unshakable love he shared with everyone lucky enough to know him. With his deep blue eyes, he could tell you everything without saying a word. His gaze was pure magic. Bubba loved deeply and delighted in life’s simple wonders: days at the family farm in his favorite cowboy boots, floating in the ocean, long walks with his mom spotting trains, and everything Christmas. Especially Christmas. It’s no surprise that, in his final days, Bubba proudly accepted the role of the next Santa Claus.
Much of Bubba’s life was spent at St. Louis Children’s Hospital, where the doctors, nurses, and staff became family. His hospital stays felt less like medical visits and more like an episode of Cheers, where everyone knew his name and smiled when he walked in. Bubba passed away in his parents’ arms, surrounded by love, after ten brave, beautiful years. He is the beloved son of Blair and Cody, and the proud big brother to his cherished little sister, Bluebelle.
Courageous Parents Network played a profound role in Bubba’s life and in ours. The resources they provided empowered us to make thoughtful and meaningful medical decisions, helping ensure those decisions never felt impossible. Today, it is an honor to continue Bubba’s legacy by serving as a Parent Champion with Courageous Parents Network. In this role, we walk alongside other families of medically complex children, offering the same support and hope that once helped guide us. Every family deserves to know they are not alone."
Please consider donating to support the incredible work of the CPN and all the families they serve!!
Donate to help Alicia raise money for The 2025 ASICS Falmouth Road Race’s fundraising campaign.
Recent donors
Donation date | Donor name | Donation amount |
---|---|---|
Aug 14 | Wai Wong | Undisclosed amount |
Aug 14 | Dennis Rosen | $100.00 |
Aug 14 | The Andres | $55.35 |
Aug 14 | Mary Auger | $55.35 |
Aug 14 | Anonymous | Undisclosed amount |
Aug 14 | Anna Ward | $28.10 |
Aug 14 | Ron Hodges | Undisclosed amount |
Aug 14 | Mary C | $25.00 |
Aug 14 | Virginia Dimakis | Undisclosed amount |
Aug 13 | Lucky Room 13 | Undisclosed amount |