Nine years and $147,000 later, they're still running strong for Raley

Nine years and $147,000 later, they're still running strong for Raley

PHILO — Raley Kirby may have only lived one day short of seven weeks, but the little girl's impact may ultimately surpass someone who lived for a century.

The Philo girl was born on April 26, 2008. Her parents, Luke and Leslie, met and fell in love when he was working as a cook and she as a server at The Philo Tavern. They got married in 2006.

The day after Raley's birth, her parents noticed something was different with their newborn girl.

"She was born healthy, as far as we knew, but she started changing within 24 hours," Leslie Kirby said. "She was always sleepy, she didn't want to eat and she was very lethargic."

Raley was ultimately diagnosed with mitochondrial disease, a genetic ailment that causes debilitating physical, developmental and cognitive disabilities.

"The disease is all about energy," Luke Kirby said. "It sapped her energy."

Shortly after coming home from Carle Hospital, Luke and Leslie took their little girl to St. Louis Children's Hospital, where the staff did its best to keep Raley as comfortable as possible until her death on June 13, 2008.

"She was smothered in love, I'll tell you that," Leslie Kirby said. "We had a team of doctors in St. Louis that were fantastic.

"When we found out that Raley would not come home with us, we literally slept in her room with her."

Two months later, the Kirbys organized a 5K running and walking race called Run4Raley.

"We wanted to do this in her honor so that others who are stricken with this disease could have a chance to benefit from the money we are able to raise, even though Raley no longer could," said Luke Kirby.

At 7 p.m. Aug. 4, more than 100 runners and walkers are expected to assemble on the streets of Philo to take part in the 10th annual Run4Raley event.

Preregistration for the race ends Wednesday, but people can still register without getting a T-shirt on race day. For information, go to run4raley.org.

Proceeds from race registration and a raffle for a grill will go to the Pittsburgh-based United Mitochondrial Disease Foundation, an organization dedicated to finding a cure for the illness that claimed young Raley's life.

Leslie Kirby says that 1,200 people walked or ran in the first nine races, and the annual event has raised a total of $147,000.

The foundation is even sending a representative this year to Philo for the first time.

Luke and Leslie Kirby have become leading advocates for the pursuit of a cure. In 2009 the couple traveled to Capitol Hill to lobby Congress for federal money to support the cause.

"It was a great experience for us," Leslie Kirby said. "We met a lot of other families who had children with the disease or had lost a child."

Luke Kirby, a veteran 5K and half marathon runner, takes part in the race each year. He even wears custom running shoes with Raley's name engraved on them.

"When I look out there and see 100 people or more running for the sake of my little girl, it is very emotional for me," Luke Kirby said. "It is amazing to see, not just friends and family, but people we don't even know who came to learn about our cause through the run. As I take part in the race, I like to think that Raley is running the race along with me from heaven."

The Kirbys have two other daughters born in the years after Raley's death. Tatum is now 7, and Cambria is now 3.

Leslie Kirby said they were a bit concerned that the younger girls might get the disease, but both girls were tested and are disease-free.

If Raley had survived, she would be enrolling this fall in the third grade at Unity East Elementary School.

For the last six years the Kirbys have offered a $500 Run4Raley scholarship at Unity High School for a high school senior who volunteers time for a cause.

"Our scholarship has nothing to do with grade point average," Leslie Kirby said. "It has to do with being selfless and what you have done to help others."

Ironically, the 2016 scholarship winner was Dawson Dodds, a young man who actually participated three times in the Run4Raley 5K race.

"We only had a very short period of time with Raley, but that short time meant everything to us," Luke Kirby said. "It was wonderful."

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