A mother from Gateshead says she is 'watching her child fade every day' after her son was diagnosed with childhood dementia at just three years old. Georgia Nonas, 29, was told to take Cody Carroll home and 'give him all her love' following his diagnosis of Sanfilippo syndrome in July 2021.
Cody, now eight, started showing symptoms at age two with recurring ear infections and hearing loss. He was given hearing aids but later stopped speaking after saying 'mamma' and 'baba'. Doctors initially diagnosed autism, but a consultant spotted 'coarse features' such as thick eyebrows and a prominent forehead, which can indicate Sanfilippo syndrome—a rare inherited disease that causes severe intellectual disability and typically death in the teenage years.
Georgia described the diagnosis as 'the worst day of my life'. She said: 'I felt numb and was very much in denial. I remember sitting at a family BBQ a few days later and I couldn’t hold a conversation. I was completely zoned out.' Over time, she learned that Cody's body lacks an enzyme, leading to waste buildup on his spinal cord and brain, causing progressive damage.
Since diagnosis, Cody's condition has declined. He relies on a wheelchair, cannot swallow solid foods, and requires daily painkillers for muscular and joint pain. He also suffers from epilepsy and sleep disturbances, common with the condition. Georgia said: 'As a parent, it’s incredibly difficult to see your child in pain. I’m constantly on edge, wondering when the next seizure is coming.'
Georgia now shares Cody's story on social media to raise awareness of Sanfilippo syndrome, which she had never heard of before his diagnosis. She advocates for earlier diagnosis, saying: 'I’m watching my child fade away every single day, and it’s enough to break a person.'
