Kayla Yates’s life was turned upside down when her son Thomas – who she described as “happy, smiling and loving” – died in December 2022.

Thomas was born in January 2011 following a traumatic labour. Shortly before his fourth birthday, he was diagnosed with Hunter Syndrome, also known as mucopolysaccharidosis type II (MPS II).

Hunter Syndrome is carried by females but only presents in males. It is extremely rare, affecting around one in 162,000 children, and the average life expectancy is about 15.

Although the condition was not immediately apparent, the Downham Market mother sensed early on that something was not right as Thomas was not meeting key developmental milestones.

Kayla Yates with her son, Thomas, who was diagnosed with Hunter Syndrome. He died in December 2022 (Image: EACH)

She said: “A few more months passed and he began walking, so I thought he’d caught up – certainly in terms of physical things.

“However, by the age of two, he still wasn’t showing any signs of trying to talk and was relying heavily on communicating by sign.

“It was also apparent he had a problem with his hearing. Someone would walk into a room, and he wouldn’t notice until he saw others react.”........

© Eastern Daily Press