Jonathan

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 their spare time looking for treatments and visiting […]

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 grandmother.

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 disease – Tay-Sachs. Cristian’s parents immediately sought out and received a

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 brain-one that will rapidly cause extreme

Kevin Michael Vargas, born to Daniel and Sandra Vargas in 1999, was the second of three children born into the Vargas family. After about 6 months, his family would come to notice he was not developing at the normal rate of most children his age. Several tests, exams, and blood drawings later, they discovered that