Beautiful Baby Freya’s Medical Support

In August 2023, the Maclays received the most devastating news any parent can get.

Their beautiful baby, Freya, was diagnosed with Tay Sachs. Tay-Sachs disease is an extremely rare genetic disorder passed from parents to child. It affects 1 in 360,000. It's caused by the absence of an enzyme that helps break down fatty substances. These fatty substances, build up to toxic levels in the brain and spinal cord and affect the function of the nerve cells. Over time, this leads to seizures, vision and hearing loss, paralysis, and other major issues. Children with this form of Tay-Sachs disease typically live only a few years. Currently, there is no cure and Freya is the first ever case in Hong Kong.

Given that Tay Sachs is an incredibly rare disease, there is no cure and treatment can only support Freya’s regression. What is certain, is that over the coming months or years ahead, Freya will require intensive medical and nursing care. As treatment is currently not available in Hong Kong, this could mean treatment in other parts of the world with the experience required to support children with these diseases.

Whilst they endure the emotional and mental challenges of coming to terms with the situation, the funds raised will alleviate the financial stress involved with further testing and medical care including specialist appointments, therapies and equipment. We hope that during this unbelievably difficult time, the monies raised will allow Simone, Ally and Freya time to be together as a family and ensure Freya is as comfortable as possible for the life she has remaining here with us.

Any funds not used for Freya will then be forwarded on to research and charities that support families affected by other rare diseases, like Tay Sachs.

Let’s show our love and support by raising as much money as we can!