Local dad hits the pavement for daughter with rare disease

Posted at 6:34 PM, Apr 12, 2017
and last updated 2017-04-12 18:34:37-04

HUDSONVILLE, Mich. – On October 17 of last year, while watching his daughter play in their Hudsonville home, Ken Buron noticed something wasn’t quite right with his daughter Emma.

“She lost all ability, all control, eyes in the back of her head, drooling,” said Buron, recounting the day that changed his family's lives forever.

Rushing her to the hospital, Ken’s worst nightmare as a parent shifted into a reality. Emma was diagnosed with DIPG, a rare childhood cancer of the brain for which there’s no cure and very little treatment.

“The next day we found out it was terminal,” said Buron.

Since that day, Ken and his wife have spent countless sleepless nights, researching and worrying. And running.

This year, Ken, a scholarship runner in college, will run the Milan Miracle Fund Run in Kent County’s Millennium Park, followed shortly after by the Chicago Marathon in October. For the marathon, one of the biggest running events in the U.S., Ken 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.

“I’m running because Emma can’t,” said Buron. “When I’m tired, when I’m down, when I don’t think I can run anymore, I just think of her and the fact that she can’t run around like she used to.”

And that is motivation enough for Ken. Unfortunately, because of DIPG’s rarity (200-400 diagnoses in U.S. children each year), it often takes a backseat in fundraising to other, more common types of childhood illnesses. But through his running and partnership with some outstanding organizations devoted to the cause, Ken is hoping to change that.

“There’s never been a survivor, and there’s a zero percent cure rate,” said Buron. “The doctor likes to throw around the word hope, but false hope isn’t any hope for me.”

Instead, Ken will take action. If you’d like to donate to the family’s GoFundMe Page, click here.

To follow Emma’s story on Facebook, click here.