On her Instagram over the weekend, Heming Willis shared a series of photos with her husband and their two daughters, Mabel, 11, and Evelyn, eight. Some of the photos included the mother with her arm around Mabel, while another image showed Willis’ youngest daughter sitting on his lap. The post concluded with the picture of a white rose in a garden, as the text over it read: “Remember to…Never Lose Hope.”
She also addressed a recent discovery about a dementia-focused clinical trial, as her husband was diagnosed with frontotemporal dementia (FTD) earlier this year.
“Yesterday I read that Wave Life Sciences ended their clinical trial that could potentially treat frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS),” she wrote in the caption. “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.”
However, Heming Willis still acknowledged how grateful she is to Wave Life Sciences for some of the other work that it’s doing. She also pointed out how her family has continued to stay “hopeful”, throughout the Die Hard star’s battle with dementia.
“So I want to say thank you to Wave Life Sciences, also to Alzheimer’s Drug Discovery Foundation and AFTD who played an active role through the Treat FTD Fund program,” she concluded. “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.”
Willis’s family first announced his FTD diagnosis in February, one year after they revealed that he’d been diagnosed with aphasia. In the joint statement, Willis’s family spoke candidly about his symptoms and detailed how his condition progressed to FTD.
“Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis,” they wrote in the statement, shared with the Association for Frontotemporal Degeneration. “Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.”
Along with Heming Willis and her two daughters, the statement was signed by Willis’s ex, Demi Moore, and the former couple’s three daughters: Rumer, 34, Scout, 31, and Tallulah, 29.
Last week, Heming Willis also shared an emotional story about her family, as she described how Evelyn has tried to help her father as he suffers from dementia. In a video shared to Instagram on 22 May, she recalled how her daughter discovered that people with dementia can suffer from dehydration while looking up “fun facts about dementia” during some free time at school.
“Now that’s not funny, but it’s kind of funny, and she really is her father’s child, because these two love some random facts,” the mother said. “I said to her, ‘Evelyn, we will always make sure daddy has a bottle of water in hand.’”
Heming Willis also described how she praised her daughter for doing this research, as she told her: “That is the most loving and compassionate thing that you can do is to be curious and educate yourself on your dad’s disease.”
According to Alzheimer’s Society, someone with dementia could “become dehydrated if they’re unable to communicate or recognise that they’re thirsty, or if they forget to drink”. This can not only cause headaches and increased confusion, but dehydration can also “make the symptoms of dementia worse”.