Dad who lost daughter to rare brain cancer fights to fund more research

GRAND RAPIDS, Mich. — If we don't, nobody else will.

Those six words sum up Ken Buron's motivation to fight the battle his young daughter couldn't against a rare and incurable brain cancer.

Last fall, Buron's daughter Emma was diagnosed with DIPG.

"It’s in a vital area of the brain stem that controls breathing, heartbeat, balance, I mean, normal functions of life," Buron said. "Before all this, I didn’t know what DIPG stood for... I had no clue."

And Buron quickly found he wasn't alone.

The cancer is so rare, it receives a fraction of the funding for research given to fight other cancers.

"Less than 4 percent of funding goes to pediatric cancer, less than 1 percent goes to  pediatric brain cancer," he said. "But 70 percent of the people dying from cancer are over the age of 65, so that outs it into perspective."

In April, Buron told FOX 17 about his plan to run the Milan Miracle Fund Run in Kent County’s Millennium Park, followed by the Chicago Marathon in October to raise awareness of DIPG and money for research.

Emma would not live long enough to see her father run for her. The 6 year old died in May on Mother's Day after giving the gift to her mother she had picked out just a few days prior, Buron said.

"Just a testament of love if you ask me, staying in this world when the odds were against her just to give her mother a Mother’s Day present," he said. "Not a second goes by of my day that I don’t think of her and we miss her a lot."

On Sunday, Buron made good on his promise as he joined other families fighting an all too familiar battle.

"I am running in her memory," he said at the start of the Milan Miracle Fund Run. "If we don’t, nobody else will."

The annual race is inspired by another young child who was diagnosed with a terminal form of childhood brain cancer a decade ago.

"It’s a family event to let people know we need to get together to make a difference," said Sharyn Capobianco, whose daughter Milan inspired the creation of the event.

"We are here to never give up the fight of our children who have lost their lives to a vicious disease," she said. "No one’s invincible, I never thought I would have a child let alone with cancer or terminal illness."

Buron says he is partnering with local DIPG organizations like Team Tommy and The Chad Tough Foundation, a partnership that is expected to yield as much as $100,000, for the October marathon in Chicago.

Milan’s Miracle Run is the first 8K run in West Michigan dedicated to fight pediatric cancer, which aims to fund research and highlight the eight primary pediatric cancers.

All money raised is used locally.

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