Lexington alumnus Sara Bennett draws national notice after battle with ALS

LEXINGTON –Sara Bennett, 39, lived in motion — teaching, leading, advocating and pouring into others until the very end.

Her parents Jeff and Donna Heck said she made an impact “from forever” and never slowed down, even while battling ALS (Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease).

Choosing purpose after diagnosis

Bennett documented her journey and day-to-day life with thousands of followers on her social media. Outlets such as People Magazine, E News and Today.com all recognized her legacy.

On Jan. 13, a post on Instagram, Bennett had written in advance was shared, announcing her passing.

“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,” Bennett said. “Even if you don’t believe anything, I am feeding the Earth, and my tree.

“I loved this life, and I am grateful for the time.”

In March, it will mark fours years since Bennett began experiencing ALS symptoms, Jeff said doctors diagnosed her one year later.

Even after she became sick, she continued running her successful business, The Ananda Edit — a professional organizing business supporting clients to ensure spaces are functional, tidy and calming.

“Once she got sick, she made a decision she was going to try and do something different (rather) than collapse on herself,” Jeff said. “She decided that wasn’t what she was going to be.”

Jeff noted Bennett’s two sons inspired her, and after her diagnosis she made a clear decision: she would pour everything into them with no idea what her time frame would be.

(Story continues below photos of Sarah and her two sons. Provided by Jeff and Donna Heck.)

As Bennett became more functionally limited she found ways to help others find adaptive devices and supportive tools for those with disabilities and limits.

Jeff said she became an advocate for clinical trials, non-traditional treatments and always looked for Hail Mary’s — anything she could find to grab more moments with those around her.

“Sara spent so much time pouring into other people and they could always go to her for support,” he said. “She was a really good friend, when the time came where she couldn’t be that anymore — they showed up for her.”

Jeff said she had given clear instructions for how she wanted her family to continue pouring into her boys after her passing.

“We know her impact on our family and it is forever lasting,” Jeff said. “She was an amazing aunt, incredible mom, sister and daughter. She brought people together.”

A teacher by calling, a legacy by nature

“It’s been overwhelming,” Jeff said. “We knew the impact she had, but this is who she has been forever.

“She’s been creating legacies since she was born.”

Bennett grew up in a family of teachers, and Jeff said teaching was also her gift. Students at Teays Valley High School asked her to distribute diplomas.

“She led clubs, coached, mentored and created the Friends of Rachel (F.O.R.) Club,” he said. “The club really was created out of thin air –becoming one of the most popular clubs in the school today.”

According to the 33 Forever website, the F.O.R. Club is inspired by Rachel’s Challenge and an organization working to promote kindness, service and community within the district.

He reminisced on memories of her as a child who would smile and wave at everyone, always saying hello.

Strength rooted in family and connection

Donna said Bennett’s strength showed both before and after her diagnosis.

“The legacy is for everybody always wanting to make a difference, be the good, see the good,” Donna said.

Seven years ago, Jeff and Donna started 33 Forever in honor of their daughter Danielle.

Donna said Bennett immediately stepped in, helping with social media, recruiting interns and building community around mental health advocacy.

“She is a catalyst of strength and positivity,” Donna said.

The day of her ALS diagnosis, Jeff and Donna joined Bennett at a restaurant. Donna noted Bennett spoke about Danielle, calling her the strongest and most powerful source in their family.

“She said, ‘I know I’m with her — how can two strong women be taken so early?'” Donna said. “She refused to let that define her.”

Donna said people will hear about her story, noting she couldn’t move or talk, but her brain never stopped. Her support system kept her going and helped her accomplish as much as she could in her time frame.

“She was the most positive influential young lady, I think most likely everybody has met,” Donna said.

The Heck family was brought together by their daughters, Sara and Danielle. The girls swam together when they were young and playfully “parent-trapped” the family into forming a bond.

“After years, we got together, and the girls always took credit for it,” Donna said.

She added that moment prepared the family for a future they never expected.

(More photos of Sara with her family and friends. Provided by Jeff and Donna Heck.)