A mother's heart-wrenching journey through the unexpected diagnosis and devastating loss of her young son to a rare disease. 'I thought my 23-year-old son had autism... then he died 18 months later.' This is the story of Sam Fairbairn, whose son, Andre, was diagnosed with frontotemporal dementia (FTD) at just 23 years old. The disease, caused by a gene mutation, led to a build-up of toxic proteins in Andre's brain, affecting his behavior and language first. Unlike Alzheimer's, FTD typically begins between the ages of 45 and 65, making Andre's diagnosis all the more shocking. But here's where it gets controversial... Sam's grief is still mixed with shock, as she reflects on the emotional toll of caring for her son and the difficult decision to donate his brain for research. 'I feel I'm on the outside, looking at myself,' she says. 'I sit on my phone and go through endless photos and videos of him. I'm overwhelmed.' Andre's behavior changed dramatically over the previous two years, with doctors initially suspecting autism. But as Sam and her husband Alastair pursued a private diagnosis, they discovered the shocking truth: Andre had FTD. The neurology team warned Sam that Andre would continue to lose mobility as his brain stopped being able to control his movement. 'They didn't sugarcoat anything, for which we were grateful.' Despite the devastating news, Sam and Alastair created a bucket list of Andre's favorite activities, taking him to car rallies and a live wrestling match. They visited the zoo and watched Andre's favorite TV shows on repeat. 'My life became what made Andre happy, what settled him,' Sam says. But the disease progressed rapidly, and Andre was moved to a nursing home and then a hospice. Sam's last words to him were on Christmas Day, when she referenced her own mother who had died of cancer when Sam was 19. 'If you want to go, you go. Your nanny will be waiting and she’ll take care of you,' she said. Andre died on December 27, and Sam's grief is still mixed with shock. 'Losing Andre, I feel I’ve lost a part of myself,' she says. But here's the part most people miss... Sam's decision to donate Andre's brain for research is a controversial one. 'I know it wouldn’t be my fault, but if that test came back and I carry it, I don’t think I could forgive myself.' While the couple believes FTD made Andre's autism symptoms more pronounced, it is possible much of his problematic behavior since childhood was caused by dementia. 'I’ve realized time is precious. I want to make sure his legacy lives on.' Sam hopes to set up a charity to raise awareness and help other families affected by early-onset dementia make memories, as she did. 'If it helps one family get an extra few years with their loved one, it will have been worth it.' So, what do you think? Do you agree with Sam's decision to donate Andre's brain for research? Or do you think there are other ways to honor his memory? Share your thoughts in the comments below!
