Before he died, he taught them how to live and love

MORRISON - Johnny Horst was alive for just five and a half months. In that time, he left behind a lifetime's worth of memories and lessons for the rest of us.

"He was a little fighter," said John Horst, Johnny's father. "He was going to stay here as long as he could."

Johnny Horst was born September 17, 2007. Up to the point of his birth, his parents and doctors were confident in Johnny's health because of a healthy and trouble free pregnancy.

On his due date, Johnny went into distress. He was born in an emergency c-section, where it was determined he had a global brain injury caused by an undetected fetal-maternal bleed. There was nothing Johnny's doctors could do to repair the injury.

Then, something amazing happened. Johnny's parents discovered he could breathe, on his own, without a ventilator.

Still, he suffered constant seizures and sleepless nights while his parents attempted to care for him and enjoy the time he was alive. But he was alive.

To help Johnny live out the short time he was given, Johnny's parents turned to The Butterfly Program, sponsored by the Children's Hospital and Porter Hospice.

"We got that five months with him that we weren't sure we would have otherwise," said Kimberlee Horst, Johnny's mom. "Every day was so rough. Every day, we didn't know what to expect.

"What we did know was that he was here with us, and we were going to enjoy as much time with him as we could while he was here."

That will to live is where Johnny's parents adapted Johnny's way of thinking: Live, love each day, Johnny's Way.

"I think it's just spending each day from moment to moment, doing the things you can to live, being close to family, and being there for each other as much as we can," said John.

To celebrate Johnny's life, John and Kim participated in their second "Hike for Hospice" at Olinger Mount Lindo near Morrison. The event brings the hospice community of nurses, families, doctors and friends together to raise money for hospice care, ensuring all families can turn to hospice for a loved one as they begin the last chapter of life.

"It's a way for them to say thank you for providing the care for their loved one, and to remember that person who passed on," said Cindi Pursley, director of Porter Hospice and St. Anthony Hospice. "It's a journey with a beginning and an end."

During the five-mile hike, families climb the 7,600-feet summit of Olinger Mount Lindo, home to the illuminated cross visible throughout the Metro Area.

"We're all pulling for the same cause," said Eric Wolverton, president of Olinger Chapel Hill and Olinger Cemetery. "[Working with] a funeral home and a cemetery, we have the unique opportunity of getting to know families who have been in hospice for an extended amount of time. We see the benefit of that hospice setting so strongly in these families."

Kimberlee and John are expecting the delivery of their second child before the end of the year.

To learn more about the Hike for Hospice event, click HERE.