Daughter of Man Who Shared ALS Journey Reflects on Final Message He Shared Before His Death (Exclusive)

Ashley Vega, Jordan GreeneFri, May 1, 2026 at 7:43 PM UTC

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Darin Nakakihara with his daughter Kendall Nakakihara; Darin NakakiharaCredit: Kendall Nakakihara; Darin Nakakihara/Instagram -

Darin Nakakihara documented his ALS journey online after his 2023 diagnosis

His daughter Kendall says he continued to uplift others, even in his final message

She hopes his legacy inspires more awareness, support and “finding joy”

Darin Nakakihara spent his final months sharing his life with ALS online, but for his daughter, the man behind the screen was defined by something much bigger than his diagnosis. Long before thousands followed his journey, she says he was the kind of person who made ordinary life feel unforgettable.

“He was joy embodied,” his daughter Kendall Nakakihara, 26, tells PEOPLE, describing the father she knew beyond social media. “He had this infectious, full-body laugh that could fill a room, and he was always the brightest light in it.”

As Darin documented his experience with amyotrophic lateral sclerosis after his 2023 diagnosis, his videos gave people a window into the realities of the disease. But for Kendall, those posts reflected something deeper — the same spirit he carried long before his illness.

Darin NakakiharaCredit: Kendall Nakakihara

Even during the most difficult moments, she says her father continued to show up with humor, honesty and a desire to help others. “Most people would have every reason to retreat, but my dad kept showing up for his community,” she says, adding that he always tried to turn his experience into something meaningful for someone else.

That mindset, she explains, was present from the very beginning, even in the moments that felt the most overwhelming. Kendall still remembers exactly where she was when her father first shared that doctors suspected ALS.

“I was sitting in a Raising Cane’s on my way to the airport, and time just stopped,” she says. Despite the fear that came with the diagnosis, she says her father approached it with “so much grace,” choosing perseverance and continuing to live with purpose.

As his condition progressed, Kendall watched his world slowly change in ways that were both physical and emotional. What once included big trips and spontaneous adventures eventually became smaller and more limited.

“I watched my dad’s world shrink from big trips, to local outings, to the neighborhood, to the house and eventually to a single room,” she says. “It’s heartbreaking.”

Darin NakakiharaCredit: Darin Nakakihara/Instagram

Still, she says what never changed was his perspective on how to live. Whether he was documenting his journey or speaking directly to his followers, his message remained the same.

“He always said, ‘go find some joy,’ and he truly lived that, even through ALS,” Kendall says.

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That message came through clearly in his final post, where Darin expressed gratitude for his life, his loved ones and the community that followed his journey. For Kendall, reading those words now feels like hearing his voice one more time.

“What stands out most to me is that even at the end, he was still encouraging other people,” she says. “His message wasn’t centered on fear or even loss — it was centered on joy.”

Beyond the emotional toll, Kendall also hopes her father’s story sheds light on the realities families face behind the scenes. She says many people don’t fully understand the financial and caregiving burdens that come with ALS.

“People don’t realize how financially devastating this disease can be,” she explains, noting that support from their community played a critical role in their ability to care for him.

Now, as she reflects on his life and the impact he had, Kendall says she hopes people remember more than just his diagnosis. For her, his legacy is rooted in how he lived every day, long before and throughout his illness.

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“I hope people never forget his spirit — how adventurous, silly and unapologetically himself he was,” she says.

More than anything, she hopes his message continues to resonate with those who followed his journey and those just learning about it now. It’s a simple idea, she says, but one that carries lasting meaning.

“I hope people don’t just remember those words, but live by them,” she says. “Go find some joy.”

on People

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Source: “AOL Entertainment”