To lose her first child, Evie, to a fatal genetic disease of the brain was devastating to a South Florida mom who had recently relocated from New York. To learn that she was at high risk for carrying the disease, and learning that her doctor simply failed to inform her, made matters worse. And finally, […]
Nicholas was unable to produce critical brain matter due to Canavan Disease. The only chance he had for survival was successful experimental gene therapy. Unfortunately, this therapy was still in the early stages of research and not available in South Florida when Nicholas was fighting his battle, requiring the family to travel elsewhere to get
Mathew was born to Kevin and Lisajane Romer in South Florida in 1995 with a fatal genetic disease – Tay-Sachs – despite both parents being tested for the occurrence of the defective gene and being told that they were not carriers. From the time their eldest son, Mathew, was 6 months old and stopped developing
Brooke was born in 1996 with Tay-Sachs disease and while her life here on Earth was short, she empowered her family to carry on the mission of providing support to affected families throughout their journey. Brooke’s mother, Monica Gettleman’s impact to The Mathew Forbes Romer Foundation and the genetic diseases community overall is incomparable. She
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 fight with a genetic disease GM-1 just days before the anticipated start date
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
