MEET GAVIN - Sky High

WARRIOR SPOTLIGHT: GAVIN

In the words of Gavin’s parents:

At three years old, a routine pediatric visit revealed Gavin was born with a bicuspid aortic valve. In early 2022 at the age of thirteen, we noticed he didn’t have the same stamina. Testing in May confirmed moderate‑to‑severe aortic valve insufficiency, and on July 5, 2022, Gavin underwent the Ross procedure. Although the surgery initially appeared successful, follow‑up appointments showed the valve was failing again.

On October 3, 2023, Gavin had his second open‑heart surgery. Surgeons attempted to repair the valve, but ultimately, he required an On‑X mechanical valve. The surgery was successful, but the next day in ICU Gavin developed blurred vision in his left eye. An MRI revealed two micro‑aneurysms—an event that should have caused permanent vision loss. Miraculously, Gavin was born with an extra artery in his left eye, something incredibly rare.

The MRI also revealed a 17 mm lesion in his right thalamus. Multiple MRIs over the following months showed no change, until May 2024, when slight growth led to two biopsies. The results brought the devastating news: Gavin has a Diffuse Midline Glioma, a tumor that cannot be surgically removed and currently has no cure.

With limited options presented, we refused to give up. Through a friend, we learned about CAR‑T therapy and immediately pursued it. After 30 rounds of radiation at the University of Michigan and a second tumor developing, Gavin was accepted into the Texas Children’s CAR‑T program in September 2024. He is now on his 13th round of treatment. The support, compassion, and community we’ve found in Texas has been a blessing during our difficult journey.

Through every challenge—two open‑heart surgeries and a life‑changing diagnosis—Gavin has remained humble, strong, and full of light. His smile is contagious, his spirit unwavering. Gavin in every sense is our walking miracle.

Not all of Sky High’s Warriors are cancer Warriors. We also provide comfort and resources for families with children who have other life-threatening conditions. Gavin and his family have spent time getting to our Sky High for Kids family.