Emma Heming Willis will “never lose hope” that scientists will find a cure for Bruce Willis’s type of dementia.
The 68-year-old retired actor is suffering from frontotemporal dementia, a progressive neurological disorder that impacts cognition and behaviour.
And his 44-year-old wife has shared how gutted she was to learn that a clinical trial for a potential treatment for the condition had concluded, but she is keeping the faith that a cure will be found.
She told her Instagram followers: “Yesterday I read that Wave Life Sciences ended their clinical trial that could potentially treat frontotemporal dementia (FTD) and amyotrophic lateral sclerosis . Where I’m not sure it could have helped us over here, it doesn’t really matter, it still feels like a gut punch.
“But I always have to look at the silver linings — they are trying. So I want to say thank you to Wave Life Sciences, also to Alzheimer’s Drug Discovery Foundation and the Association for Frontotemporal Degeneration, who played an active role through the Treat FTD Fund programme.”
She added: “Please keep that momentum going, build on the learnings/findings, and don’t give up on this loving community. Our family will continue to keep the faith and never lose hope.”
Before getting the dementia diagnosis in February, Willis stepped away from acting last year after he was initially diagnosed with brain disorder aphasia, which affects his ability to understand language.
Heming Willis’s post came as Willis’s daughter Tallulah Willis, 29, wrote an essay for “Vogue” and highlighted the early signs of the disorder that they didn't recognise.
Tallulah began: “My family announced in early 2022 that Bruce Willis was suffering from aphasia, a brain-mediated inability to speak or to understand speech, and we learned earlier this year that that symptom was a feature of frontotemporal dementia, a progressive neurological disorder that chips away at his cognition and behaviour day by day.
Tallulah – whose mother is actress Demi Moore – suspected something wasn’t right for a while and admitted she thought her father had “lost interest” in her.
She recalled: “It started out with a kind of vague unresponsiveness, which the family chalked up to the Hollywood star’s hearing loss: ‘Speak up!’ ‘Die Hard’ messed with Dad’s ears.
“Later that unresponsiveness broadened, and I sometimes took it personally. He had had two babies with my stepmother, Emma Heming Willis, and I thought he’d lost interest in me.”
Things got so bad that Tallulah broke down at a wedding in 2021 after realising that her dad would never be able to give a speech at her wedding.
She continued: “Suddenly I realised that I would never get that moment, my dad speaking about me in adulthood at my wedding. It was devastating.
“I left the dinner table, stepped outside, and wept in the bushes.”
Willis also has Mabel, 11, and Evelyn, 9, with Emma, and Rumer, 34, and Scout, 31, with his 60-year-old former wife Demi.