Listen to Catherine's story

  

Two-year-old Catherine Radivilova’s story is as unlikely as it is amazing. While pregnant with Catherine, Tamara Radivilova and her son fled their home in Ukraine in the days following Russia’s invasion, while her husband stayed behind to fight in the war. For the first nine months of her life Catherine developed as expected, but after symptoms arose and setbacks occurred, Catherine was diagnosed with Tay-Sachs disease, a fatal genetic disorder.

“I thought, well, if we're going to possibly do this, we're going to have to do it through some intervention, divine or otherwise.”

- Terence R. Flotte, MD, the Celia and Isaac Haidak Professor, executive deputy chancellor, provost and dean of the T.H. Chan School of Medicine

Through an unlikely series of events, Catherine and her mother found themselves in the U.S., where Catherine became the final participant accepted to a UMass Chan gene therapy clinical trial for Tay-Sachs. Despite ongoing challenges, Tamara Radivilova’s resilience and love shine through as she fights for her daughter’s future.

What is Tay-Sachs disease? 

Tay-Sachs disease is a rare genetic disorder that destroys nerve cells in the brain and spinal cord. It’s caused by the absence of an enzyme that helps break down fatty substances, called gangliosides, which, without the enzyme, build up to toxic levels and impact the function of nerve cells. 

    Tamara Radivilova holds her daughter, Catherine, in BrusselsTamara Radivilova holds her daughter, Catherine, in Brussels. Photo: Jennifer Berryman

    Catherine, 2, undergoes physical therapy at home in BrusselsCatherine, 2, undergoes physical therapy in Brussels. Photo: Jennifer Berryman

    A physical therapist, Catherine and her mother, Tamara Radivilova, during a therapy session. From left, a physical therapist, Catherine and her mother, Tamara Radivilova, during a therapy session. Photo: Jennifer Berryman

    A close-up of Catherine’s hands.A close-up of Catherine’s hands. Photo: Jennifer Berryman

    A physical therapist stretches Catherine’s leg during a session.A physical therapist stretches Catherine’s leg during a session. Photo: Jennifer Berryman

    Tamara Radivilova kisses her son, Dmytrii, in their kitchen.Tamara Radivilova kisses her son, Dmytrii, in their kitchen. Photo: Jennifer Berryman

    Tamara Radivilova takes her daughter, Catherine, for a walk outside.Tamara Radivilova takes her daughter, Catherine, for a walk outside. Photo: Jennifer Berryman

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To learn more about Tay-Sachs disease, patient advocacy and research, visit: 

UMass Chan Medical School
National Tay-Sachs & Allied Diseases Association
Cure Tay-Sachs Foundation
Blu Genes Foundation
The Mathew Forbes Romer Foundation     

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