A mother's worst nightmare: When a suspected autism diagnosis turns into a fatal disease. But here's where it gets controversial—was it dementia all along?
Sam Fairbairn had a gut-wrenching feeling that something was wrong with her 23-year-old son, Andre. Initially, doctors suspected autism, but as his health rapidly declined, a shocking truth emerged. Andre had frontotemporal dementia (FTD), a rare form of dementia caused by a gene mutation, leading to toxic protein buildup in the brain. Unlike Alzheimer's, FTD typically affects behavior and language first, and it strikes early, usually between ages 45 and 65.
But Andre was just 23, a young man who loved music, motor racing, and watching Peaky Blinders with his mom. The family was told that if he lived to 30, it would be a miracle. Sam recalls the devastating moment in June 2024 when they received the diagnosis, and how her son was too ill to comprehend it. She returned home, heartbroken, to break the news to her family.
Andre's life was tragically cut short in December, just months after his diagnosis. Sam's grief is still raw, and she finds herself in disbelief. She reflects on her son's life, a 'mummy's boy' who loved gaming and the outdoors. But the signs were there, even at his mother's wedding in November 2022, where he seemed distant and left early.
As his behavior changed, Sam sought answers. She noticed his lack of motivation, forgetfulness, and repetitive speech. Initially, she suspected autism, but as tests revealed high scores for autism, something else was amiss. The family pursued a private diagnosis, but Andre's condition worsened, and they feared there was more to uncover.
Returning to the GP, Sam's worst fears were confirmed. Andre underwent an MRI scan, which hinted at dementia. His safety became a concern as he exhibited dangerous behaviors like putting a whole can of soup in the microwave. The family's life revolved around his care, and Sam gave up her job to be there for him.
The dementia diagnosis was a shock, especially given Andre's young age. The family was told that if Andre were older, he might have been able to cope. As his condition progressed, he needed constant surveillance, and the emotional toll was immense. Sam was hospitalized with stress-related pain, and Andre's abilities continued to decline.
The family created a bucket list of Andre's favorite activities, cherishing every moment. But his speech deteriorated, and he became less mobile. The neurology team was blunt, warning Sam that Andre's mobility would worsen. The only treatment offered was antidepressants, which Sam hoped would ease his pacing.
As Andre's condition progressed, he was moved to a nursing home and then a wheelchair. After a chest infection, he was rushed to the hospital, and Sam was told he was nearing the end. She made the difficult decision to let nature take its course if he developed another infection.
Andre passed away in a hospice on December 27, leaving Sam heartbroken. She reflects on the controversial question: Could Andre's behavior since childhood have been early signs of dementia? The family donated Andre's brain for research, hoping to help others. Sam's grief is intertwined with a determination to raise awareness and ensure her son's legacy lives on.
