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 normally in 1995, they knew his ultimate fate: He’d never speak, crawl, walk or neurologically progress in any way. Tay-Sachs disease, an invariably fatal genetic disease of the brain, had robbed little Mathew of any chance of a future. Despite the odds, Mathew lived to age 8, but his legacy has lived on much longer.
To honor Mathew — and to spread awareness, and support genetic testing, counseling and research funding to one day eradicate the disease – Kevin and Lisajane created the Mathew Forbes Romer Foundation in 1998. The Romers had always known that their ancestral background meant they were part of the high-risk group to be carriers of the Tay-Sachs gene. According to statistics, when both parents are carriers, they have a 1 in 4 chance of having a Tay-Sachs-stricken child. “We did everything right. We both got tested before-hand and were told that neither of us was a carrier,” Kevin recalls. The couple later learned that their screening tests had been both administered, and interpreted, improperly. So in addition to caring for their dying child, Kevin said, “We made it our immediate mission to improve testing procedures and protocols. We didn’t want any other parents to be blindsided.”
Since its launch, the MFRF has helped genetically test thousands of individuals at screening fairs around South Florida. In addition, it has funded and produced, in association with a pioneer of mass genetic testing and screening, Dr. Michael Kaback, the first ever laboratory training video and distributed it to 40 laboratories worldwide – to help prevent errors in genetic testing.