Ian Brown wrote about his son’s struggle with an orphan syndrome for Canada’s Globe and Mail newspaper, but also included some emotional video footage of his son Walker watching him play guitar and trying to understand the world.
Brown struggles to create routine for his son in the chaos of what he describes as “cardio-facio-cutaneous syndrome, a technical name for a mash of symptoms”. The routine helps to keeps Walker relaxed but it is also the routine that “makes the eight years [of caring for Walker] seem longer, until afterward, when because of the routine the years seem to have evaporated.”
It’s a story told with great honesty as Brown and his wife struggle to keep their son at home rather than surrendering to care and try to find other parents coping with children with similar syndromes. Most of all, Brown’s isolation was compounded by the lack of people to empathise with. “There wasn’t even anyone to compare him to. His illness… afflicted about 100 people. But they were scattered at random in Australia, Denmark, Britain, Japan, the United States.”