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Family Stories

The Faces of SLC1A4 Deficiency

According to the Talmud, whoever saves a life is considered to have saved an entire world. Every research dollar supports a child and a family—and helps protect those yet to come.

Molly

Molly's Story

Before having children, we did extensive genetic testing through one of the most comprehensive genetic testing panels available. We were tested for hundreds of genetic conditions on both general and Ashkenazi Jewish testing panels, so when Molly was diagnosed with SLC1A4 Deficiency at nine months old, we were shocked. Despite the genetic condition being discovered in 2015, it has still not been added to most genetic testing panels.

There are no words to express the depth of our grief. This is not the future we had imagined for her or for our family.

We are holding on to hope — hope for progress, for discovery, and for a better future for children like Molly and families like ours whose lives are shattered by Jewish genetic diseases.

— Molly's parents, Jenny & Josh

Levi

Levi's Story

Levi was diagnosed with SLC1A4 in April 2025 when he was 4 years old. He is the only known person with the diagnosis in South Africa.

As we started to learn about what the diagnosis meant for his life, we fell into a space of hopelessness. But scientific advancements are happening every day, and we believe deeply in the power of research and awareness to change what is possible. Levi's story is now part of this momentum, and the global Jewish community should be committed to helping move science forward to solve this Jewish genetic issue.

— Levi's parents, Martine & Greg

Shmuel

Shmuel's Story

When our son Shmuel was born, we were overjoyed. Everything was wonderful—until it wasn’t. Even in our sleep-deprived postpartum state, we knew that something wasn’t right. At about six months old, we received the diagnosis. The doctor called us in for a consultation two hours before the first candle of Chanukah.

Living with a child who is physically limited and mentally “not there” involves constant reminders of loss — a grief cycle that lasts a lifetime. We still live every day thinking of the son we hoped to have; the son we still wish he was. Each day, we hold onto the possibility that advances in research will bring new understanding and, ultimately, meaningful treatments.

— Shmuel's parents, Malky & Efroim