Freya Maclay’s story has moved many, capturing a full spectrum of emotions. Born in Hong Kong in August 2022, Freya was a miracle baby for her parents, Simone and Ally, who had spent three years trying to conceive. Their joy turned to heartbreak nearly a year later when Freya was diagnosed with Tay-Sachs disease, a rare and fatal condition that causes toxins to build up in the brain and spinal cord, leading to severe symptoms like seizures, vision and hearing loss, and eventually death. Sadly, there is no cure.
Treatment focuses on alleviating symptoms and improving quality of life. Freya’s case is the first recorded in Hong Kong. Symptoms typically appear around six months, and life expectancy ranges from two to four years, with pneumonia often being the cause of death.
During an interview at a cafe in Central, Hong Kong, Freya lay motionless in her pram, occasionally flickering her big blue eyes—a sign of seizures, as explained by Simone. The Australian-born Simone and her Scottish husband Ally, both teachers in Hong Kong, were well-informed about Tay-Sachs only after their daughter’s diagnosis.
Tay-Sachs is extremely rare, occurring in about one in 360,000 babies. It results from inheriting a defective Hexa gene from both parents, which affects the breakdown and recycling of toxic substances in the brain and spinal cord. About one in 250 people carry this gene mutation. Simone often refers to it as a “cruel disease.” Freya’s early months were typical, hitting all developmental milestones. However, during a holiday in Greece for her baptism, Freya’s health started deteriorating. By August 2023, she was diagnosed with Tay-Sachs in Hong Kong, explaining her muscle weakness and coordination issues.
The couple, who met at the Hong Kong Sevens rugby tournament, have been overwhelmed by the support from family, friends, and the community. A GoFundMe campaign has raised A$271,910 (US$179,000) to support Freya’s medical needs.
“The outpouring of support is heart-warming,” says Simone. “It’s a powerful reminder of community strength and compassion.” Ally adds that this support has reinvigorated their determination to raise awareness for Tay-Sachs.
At the cafe, Ally demonstrated how they feed Freya through a peg tube multiple times a day, along with administering various medications, including anti-seizure drugs. Freya, at 20 kilograms, is significantly heavier than the average 23-month-old, making daily care challenging.
Despite the emotional toll, the couple takes one day at a time. Simone cherishes the memories captured during their travels last year, as current travel is impossible. Freya enjoys pool time and has her own custom swimwear line from Budgy Smuggler in Australia, as well as merchandise like the “Frey Frey” cap that Ally proudly wears.
Their mission now is to raise awareness about Tay-Sachs. South Australian winery Auld Family Wines has launched a Frey Frey Cabernet Shiraz to support their cause, and Hong Kong-based French artist Elsa Jeandedieu plans to create a mural of Freya.
“Tay-Sachs is rare, but a small global community is raising funds in hope of a cure,” says Ally. “Freya’s resilience inspires us daily, underscoring the urgency of our cause.”
READ MORE: