Among the typical family portraits of birthdays, holidays and celebrations in the study of the Suffolk farmhouse belonging to Becky Barletta’s parents, is a landscape shot of the Himalayas, shrouded in mist.
It was taken by Becky in 2013 while on a six-week trek with her then boyfriend, Luca, in Nepal’s Annapurna Massif. Her uncle, James Dorrington, had just died aged 59, only a few years after he had been diagnosed with frontotemporal dementia, a rare and cruelly aggressive form of the disease, which had also just claimed the life of a cousin in her early 40s.
As Becky could not make it back for her uncle’s funeral, she instead decided to pay tribute by spelling out his name in rocks on the mountain slope: “James. Father. Brother. Son.”
Nobody then could have imagined that this bright, happy and supremely fit young woman with her whole life ahead of her would be the next to succumb. But, three years later, only a few months after her wedding day, Becky received the same terrible diagnosis.
At the time, she was 31, making her one of the youngest people in the country ever to be diagnosed with the disease. Her subsequent decline has been as rapid as it is heartbreaking.
“I have to remember not to talk about her in the past tense because she is still with us,” says her 30-year-old sister Sophie Gilbert. “It is horrendous to watch and I miss her so much. I haven’t seen a glimmer of the old Becky for ages now.”
Sophie lives next door to her parents in a converted barn with her husband Ben and two children, Alfie, two, and Emilia, who was born just three months ago. The former graduate from the London College of Fashion now works for the family bakery business, Dorrington’s, which runs 16 shops across Essex, Hertfordshire and Cambridge and marks its centenary in 2019.
Frontotemporal dementia – named after its destruction of lobes in the brain which control emotions and social behaviour – is a hereditary disease.
While the research remains scant, typically each of the children or siblings of someone with a genetic mutation that can cause the disease has a 50 per cent chance of carrying it themselves, although that does not necessarily mean they will then develop symptoms. Between 10 and 15 per cent of sufferers have several close relatives in…