Baby with fatal Tay-Sachs disease teaches her Hong Kong parents to celebrate each day

Hong Kong teachers Simone and Ally Maclay find strength in community as they raise awareness of long-wished-for baby Freya’s rare condition

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Freya Maclay, 23 months old, who has Tay-Sachs disease, with her parents, Ally and Simone Maclay, in Central, Hong Kong. The disease is rare and incurable, and the couple have been raising awareness of it, and funds for research. Photo: Xiaomei Chen

Kylie Knott

Published: 11:15am, 27 Jul 2024Updated: 12:29pm, 27 Jul 2024

Freya Maclay’s story has touched many people – and tugged on every emotion.

She was born in Hong Kong in August 2022 after her parents, Simone and Ally, had spent three years trying to conceive. Freya was their miracle baby.

But almost a year later, their joy turned to heartbreak when Freya was diagnosed with Tay-Sachs disease, a rare condition in which toxins build up in the brain and spinal cord, leading to seizures, vision and hearing loss, paralysis and eventually death – there is no cure.

Treatment of the disease is focused on reducing its symptoms and improving a patient’s quality of life. Freya’s case is the first in Hong Kong.

Ally with his daughter. Tay-Sachs disease is a rare condition in which toxins build up in the brain and spinal cord, leading to seizures, vision and hearing loss, paralysis and eventually death. Photo: Xiaomei Chen

Symptoms in babies usually appear at around six months; the life expectancy of an infant with Tay-Sachs is between two and four years. Pneumonia is often the cause of death.

At a cafe in the Central district of Hong Kong Island, Freya lies motionless in her pram, her big blue eyes occasionally flickering. That is often a sign that she is having a seizure, says Simone. “She can have multiple seizures a day.”