Emma Heming admitted to feeling guilty about having certain privileges to support husband Bruce Willis’ dementia diagnosis that others in similar situations may not have access to.
“I struggle with guilt, knowing that I have resources that others don’t,” Heming wrote in an op-ed for Marie Shriver’s Sunday Paper published Saturday.
“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,” she explained.
“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.”
But Heming, 45, explained that she has found purpose in uplifting others through sharing her family’s story.
“I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood,” the model added.
The model shared that she realized her ability to “get out for a hike” is a something not everyone has. Emma Heming/Instagram
“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 — who shares daughters Mabel, 11, and Evelyn, 9, with Willis — added that she has realized the importance of being an “advocate” for the “families who don’t have the time, energy, or resources to advocate for themselves.”
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She also said that speaking out about Bruce’s diagnosis has helped her and their blended family in many ways.
“I have so much more hope today than I did after Bruce was first diagnosed,” Heming wrote, adding, “I understand this disease more now, and I’m now connected to an incredible community of support.”
The Willis family announced the “Die Hard” star’s diagnosis with frontotemporal dementia in February. Kevin Mazur/WireImage
“I have hope in having found a new purpose — admittedly one I never would have gone looking for — using the spotlight to help and empower others,” she continued.
“And I have hope in how our entire family can find joy in the small things, and in coming together to celebrate all the moments life has to offer.”
The “Die Hard” star’s family announced in March 2022 that he was stepping away from acting after being diagnosed with aphasia.
Aphasia is a neurological disorder that can impact a person’s language processing and communication abilities, according to the National Institutes of Health.
The actor has a blended family of five daughters, whom he shares with Heming and ex-wife Demi Moore.demimoore/Instagram
A year after revealing the heartbreaking diagnosis, the Willis family — including the actor’s three daughters with ex-wife Demi Moore — announced that the “Fifth Element” star’s disease had progressed to frontotemporal dementia.
“While this is painful, it is a relief to finally have a clear diagnosis,” the family wrote in a statement on the Association for Frontotemporal Degeneration website.
“FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.”
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