At a Glance
- Sara Bennett died at 39 after a three-year battle with ALS, announcing her own death via a pre-written Instagram post on January 13
- Husband Rusty Bennett became her full-time caregiver in March 2025, spending unexpected “bonus time” with her through the holidays
- The family requests donations to their sons’ 529 college savings plans instead of flowers, using codes L4R-R63 (Lincoln) and T46-E6P (William)
Why it matters: The Bennetts’ story shows how one family transformed terminal illness into a legacy of education for their children.
Sara Bennett spent her final months planning beyond her death, ensuring her two young sons could still pursue the college education she and her husband dreamed for them. The 39-year-old content creator and mother died January 13 after living with ALS for nearly three years, leaving behind a community of 113,000 Instagram followers and a family determined to honor her final wishes.
The Diagnosis That Changed Everything
Sara first noticed symptoms in spring 2022. By March 2023, doctors confirmed what the family feared: ALS. The prognosis gave her two to five years to live.
“We just had to be honest,” Rusty recalls about telling their sons, Lincoln, 9, and William, 7, about their mother’s terminal illness. “Then we could say, ‘Hey, we’re not buying mom a Halloween costume because she’s not going to be here.’ And it helped them.”
The conversation proved devastating but necessary. The children handled the news better than their parents expected, allowing the family to prepare together for the inevitable.
Bonus Time
Rusty left his consulting job in March 2025 to become Sara’s full-time caregiver. They didn’t expect her to survive past autumn. She proved them wrong.
“I kept calling it bonus time,” Rusty says. Sara made it through Thanksgiving, Christmas, and even celebrated New Year’s Eve with her family, watching the ball drop from their primary bedroom where she spent her final months.
“It was awesome. We got to watch the ball drop. We all did it. We let the kids stay up until midnight this year, so they were thrilled,” Rusty shares. “It was unexpected and quite wonderful to even have her there.”
From Organizer to Advocate
Sara began sharing online in 2020 to promote her professional organization business, The Ananda Edit. After her diagnosis, she rebranded to @TheAnandaPivot, using her platform to educate others about ALS.
“She just felt really strongly that she wanted to show people what the daily looks like – that it’s hard and that it’s tough on you and it’s tough on the people around you, but also, here’s where you find joy and here’s how you do that,” Rusty explains.
Her husband watched from the sidelines, admiring her courage to share such an intimate journey publicly. “Social media is what it is. It can be a wonderful place,” he notes. “Sara being able to connect, not only for herself to learn and to gain knowledge, but for her to spread it out… It’s nice to get all of that stuff out there in the hopes that somebody can see it and use it.”
A Mother’s Final Wish
Before her death, Sara and Rusty made a crucial decision about memorial contributions. Instead of flowers or traditional donations, they chose to invest in their children’s future through 529 college savings plans.
“I don’t need 60 bouquets of flowers. Help the kids,” Rusty says firmly. “That’s what’s the most important part at this point, just doing the best we can for them.”
The couple, both college-educated, had established the savings accounts when Lincoln and William were babies. Even after Sara’s terminal diagnosis, ensuring their sons’ educational opportunities remained paramount.
How to Contribute
Donors can contribute directly to the boys’ educational funds using these codes:
- Lincoln: L4R-R63
- William: T46-E6P
The family shared these codes via Sara’s Instagram page after her death, making it simple for her community to support the children’s future.
Legacy of Love
Sara’s final Instagram post, written before her death, captured her perspective on life and mortality: “I am not in pain, or tired. I can laugh, talk, and I can move. Reflecting in my last few months of my life, I am glad I didn’t go suddenly even WITH the suffering. I finished my list. Even if you don’t believe in any thing, I am feeding the earth, and my tree. I loved this life, and am grateful for the time.”
Her words resonated with thousands. In the six days since the announcement, heartfelt comments and posts have flooded her account as followers mourn her absence and celebrate her impact.
Rusty remains surrounded by support from both families and friends. “We’ve both been blessed. I’m really close with my family, and [Sara] has a great family and tons of friends,” he tells News Of Los Angeles. “Everybody’s definitely reached out and [is] doing their best to help.”
Key Takeaways
- Sara Bennett transformed her ALS diagnosis into a platform for education and connection, building a community of 113,000 followers who became invested in her family’s journey
- The Bennetts’ decision to fund their sons’ college education instead of accepting traditional memorial gifts demonstrates how families can create lasting legacy from loss
- Their story highlights the unexpected gift of “bonus time” that allowed for meaningful goodbyes and intentional planning for their children’s future
