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“When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that,” Heming Willis, 45, wrote in a Saturday, November 11, article for Maria Shriver’s Sunday Paper. “When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern.”
Due to her privilege, Heming Willis noted that it is “important” for her to continue to be an advocate and to make sure others who “don’t have the time, energy, or resources to advocate for themselves … feel seen and understood.”
She continued: “I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs.”
Heming Willis — alongside her blended family with the “Die Hard” actor and Demi Moore — revealed in March 2022 that Willis was stepping away from acting amid his battle with aphasia. In February, they gave an update, noting that Willis was given a “more specific diagnosis” of frontotemporal dementia.
“While this is painful, it is a relief to finally have a clear diagnosis,” the family said in a statement at the time. “FTD is a cruel disease that many of us have never heard of and can strike anyone.”
“Bruce has always found joy in life — and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us,” they continued. “We have been so moved by the love you have all shared for our dear husband, father and friend during this difficult time. Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible.”
Hemig Willis shares daughters Mabel, 11, and Evelyn, 9, with Willis. He’s also dad to daughters Rumer, 35, Scout, 32, and Tallulah, 29, with Moore, 61.
Tallulah, for her part, revealed that her dad’s condition is “really aggressive” and “very rare” during an appearance on “The Drew Barrymore Show” last week.
“He is the same, which I think in this regard I’ve learned is the best thing you can ask for,” she explained. “I see love when I’m with him, and it’s my dad and he loves me, which is really special.”
“On one hand, it’s who we are as a family, but also, it’s really important for us to spread awareness,” she continued. “If we can take something that we’re struggling with as a family to help other people, to turn it around to make something beautiful about it, that’s really special for us. And part of what’s been a really beautiful way for me to heal through this is becoming like an archeologist to my dad’s world, to his little trinkets and doodads.”
Heming Willis previously spoke about her husband in a tearful interview with the “Today” show. At the time, she noted that “it’s hard to know” if the actor is aware about his condition.
“Dementia is hard,” Heming Willis told Hoda Kotb. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”