Thirty-eight people participated in the 2017 Chicago Marathon to benefit The ChadTough Foundation, training for months to contribute to Diffuse Intrinsic Pontine Glioma (DIPG) research and awareness.

One of those participants, Ken Buron, was running for his daughter, Emma. Emma had fought DIPG for seven months before passing away on Mother’s Day, May 14, 2017.

“She was just an amazing little girl,” remembers Ken. “I miss her every single day. I still can’t even bring myself to put her tombstone up. It’s not fair.

“I put her on the bus the beginning of the school year last year, I never thought in my wildest dreams I wouldn’t be taking her off the bus at the end of the school year.”

Emma’s Life

Emma BuronEmma Buron was born on August 11, 2010 to Vanessa and Ken. She was a happy, content little girl who enjoyed the outdoors – picking worms and fishing – but also playing dress-up and having tea parties.

She and her younger brother, Elliott, were inseparable best friends. Her baby brother, Eugene, was still an infant when Emma was diagnosed with DIPG on October 17, 2016.

“Elliott misses her a lot,” said Ken. “Most nights he watches video of her or pictures of her. I’d say he probably cries for her once a week. He prays for her every night. I’d say he’s having the hardest time. But he still knows to remember her and miss her, and that she’s still here with us.”

During a recent grocery store trip, Elliott was helping his dad buy flowers. While they were checking out, the clerk asked Elliott, “Are you buying those flowers for your mom or your sister?”

“He says, ‘No, my sister’s dead. She’s in heaven. She had brain cancer,’” recalls Ken. “The lady just came to tears and gave him some extra stickers and lollipops for her. It made my day in a good way. He was telling us, ‘She’s okay. She’s in heaven and we’re going to see her again one day.’”

A “Little Old Lady”

When asked to tell a story about Emma that embodied who she was, Ken recalled a conversation he had with her a month following her diagnosis.

“I didn’t think it was fair to tell her that she was going to get better,” he said. “I said to her, ‘Emma, do you want to try to keep getting better?’ She said, ‘Yeah, I still want to try to get better.’

“I said, ‘Okay, honey. Well what if we don’t get better?’ And she said, ’It’s okay, Daddy.’ I said, ‘What do you mean?’ She said, ‘God told me in my heart I’d be okay.’ I said, ‘Who told you that?’ She said, ‘Nobody. God told me.’”

Despite her circumstances, Emma was content with her prognosis. She never cried and never complained.

“As her disease progressed she turned into a little old lady almost, and had so much wisdom towards the end,” said Ken. “It was just amazing to see her transform from a little girl almost to an adult.

“It was just amazing that she could overcome something like that and still be happy every single day and live every second of her life that she had left.

“I truly believe that she lived every second happy, just for the people around her and she never really thought about her disease. It was amazing to see.”

The Chicago Marathon

The 2017 Chicago Marathon took place October 8, 2017, less than five months after Emma’s death. Ken’s training began late and he developed an injury, halting his training three weeks before the event to try and heal.

Ken Buron

Ken Buron running the 2017 Chicago Marathon

“Then the day of the marathon, I just hopped on the start line to go,” he said. “At about mile 16 or so it was hurting pretty bad.”

At mile 20, he stopped.

“I was hurting a lot,” he said. “I stopped and I just started crying. Then I felt like a warmth over my body and it just felt like she was there and I just kept going.

“It was just great to have a day dedicated to her.”

Ken is running the marathon again this year, something he didn’t foresee after finishing last year’s race.

“There was a lot of emotional baggage attached last year and I think this year I can really focus and compete a little better,” he said. “I’m excited for that. My neighbor, he beat me last year … he’s not beating me this year.”

Eleven people are signed up for the 2018 Bank of America Chicago Marathon with 10 spots remaining. All proceeds benefit The ChadTough Foundation and DIPG research.

“I never knew about anything like DIPG prior to Emma getting sick,” said Ken. “I never knew these kids get 4-percent of federal funding. I try to tell people as much as I can about her and I think if people know, that’s one way that we can make a difference to change things.”

Sign up for the 2018 Bank of America Chicago Marathon on!