Jordan

On September 17, 2019, after years of searching for a diagnosis, our four year old son Jordan was diagnosed with a rare disease called TECPR2. What we would learn in the days that followed is that like Tay Sach’s Disease, TECPR2 is also a fatal genetic disease of the...

Cristian

Born a healthy and vibrant boy, Cristian was crawling and moving around in his crib like a typical baby. At age three to six months, his parents started to notice slight developmental delays. In 2012, he was diagnosed with a terminal, untreatable, non-curable genetic...

Eli

Eli was deeply loved and cared for by multiple generations of the Capone Family during his short life. “Everybody needs to make sure they are tested, and they have done everything they can do. This is horrific, scary and a life changer,” said Laurie Capone, Eli’s...

Nicole

Nicole Friedland was born a long time ago in a place very far away. 1980 in Johannesburg, South Africa… When she died 19 months later, her parents had never heard of Tay-Sachs nor realized their family was at risk. Nicole’s parents Frank and Shelly spent all of...

William

Back in 2014, the Marquardt family, one of the Nursing Pilot Program’s biggest supporters, was scheduled to be one of the initial families participating in the Foundation’s Nursing Pilot Program with FAU. Unfortunately, their son William lost his 8 and one-half year...