Alex DeSantis

In March of 2024, Alex was diagnosed with kidney failure caused by a rare disease called Fabry disease. After spending time in the hospital, he began dialysis in February 2025. Since then, dialysis has become a major part of everyday life. 5 nights a week, for about 4 hours each treatment. It has changed the way we spend time together as a family, and we’ve had to learn how to fit family moments into the dialysis schedules.

Despite everything, Alex continues to stay strong and hopeful while waiting for the perfect kidney donor match. A kidney transplant would mean so much more than improved health it would give him the chance to truly live life again. One of the things he looks forward to most is traveling to visit his best friend, and being able to show Isabel new places, experiences, and adventures in the world.

We are incredibly thankful for all the love, support, prayers, and encouragement during this journey.

Family and friends of Alex Desantis are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a transplant. Alex has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.