At a Glance
- Sara Bennett shared a posthumous Instagram message on Jan 13, 2025, announcing her death at 39.
- She left a scrapbook of guidance for her sons, Lincoln (9) and William (7), after an ALS diagnosis in March 2023.
- The family created 529 college savings plans and a public donation link for the boys.
- Why it matters: The story shows how a public figure managed a terminal illness while protecting her children’s future.
A public farewell
On Jan 13, 2025, Sara Bennett posted a pre-written message on her Instagram page, @TheAnandaPivot, to 113,000 followers. She announced her death at 39 and thanked her audience for their love and support. The post was a final, candid note that reflected her desire to be honest with her family and fans.
Letters to her sons
On Nov. 5, Sara uploaded a carousel of a scrapbook she titled Advice and Love Letters to you both from your mom. The five photos showed her with Lincoln, 9, and William, 7, and with their father, Rusty. The images were a visual diary of the lessons she wanted to pass on before she could no longer speak.
Preparing the kids for a hard truth
The day doctors confirmed Sara’s ALS in March 2023 was a turning point. After the appointment, Rusty recalls, “I was like, ‘I know this is going to sound stupid because of what happened today, but I can’t stop thinking about the kids. What are we going to tell the kids? How do we handle the kids? I know you’re going to die, and that’s something we’re going to have to unravel. That’s really going to suck for us both, but oh, God, what do we do for our kids?'” He added that Sara was thinking the same.
Rusty says Sara immediately began researching how to explain ALS to children. She reached out to loved ones, scoured social media, read grief literature, and joined a group of women under 40 living with ALS. “She just did a deep dive,” he says. “She is the most resourceful person I’ve met in my entire life.”
The couple decided to tell the boys about ALS in “chapters.” Rusty explained, “We were like, ‘OK, well, we’ll just tell them chapters of the book. We’ll read a chapter at a time. We won’t tell them the whole thing yet, but they need to know what it is.’ We knew that the end of the story was really going to suck and really hit hard.”
Communicating ALS to young children
Rusty emphasizes the science-based approach they used. “It was like, ‘Her brain doesn’t talk to her muscles,'” he says. They started with small, concrete facts: “Hey, I know you really want mommy’s arms or hands to get better. They’re not going to get better. Mommy’s not going to be able to walk as well as she used to.”
He chose to be upfront because his sons are “smart and extremely observant.” “My oldest, Lincoln, is super inquisitive. He’s the kind of kid who would sit down in a bedroom and ask you 1,000 questions before bed, not even about ALS, just about life.”
Life after diagnosis
In early 2025, the family did not expect Sara to survive beyond autumn. Rusty took leave from his consulting job to care for her full-time. By summer, they had prepared the boys for the end of their mother’s life. Rusty calls that conversation “the worst conversation I’ve had to have my entire life,” but notes the children handled it better than they did.
Sara surprised everyone by living through Thanksgiving and the holiday season. She was present for Rusty’s 43rd birthday on Dec. 31, watching the ball drop from their primary bedroom. Rusty recalls, “She was in our primary bedroom; she wasn’t really able to go anywhere for the last couple months, but we just partied right there in the bedroom.”
Legacy and 529 plans
Before she died, Sara and Rusty decided that anyone who wanted to help the boys could contribute to their 529 college savings accounts. They had set up the plans when the boys were babies, prioritizing their education even after the diagnosis.
In the days after Sara’s death, Rusty shared a post on her Instagram page with UGift codes: L4R-R63 for Lincoln and T46-E6P for William. He urges donors: “Help the kids. That’s what’s most important at this point, just doing the best we can for them.”
Key Takeaways
- A public figure can use social media to communicate a terminal diagnosis and plan for her children’s future.
- The Bennett family used a chapter-by-chapter approach to explain ALS to 9- and 7-year-olds.
- They kept the boys’ education a top priority, setting up 529 plans and a public donation link.
- The story highlights the emotional and practical challenges parents face when dealing with a life-shortening disease.
