Family who founded 5K for Peyton Manning Children’s Hospital discusses special meaning of race

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CARMEL, Ind. -- The Cooley family had such a moving experience during their oldest child's time at the Peyton Manning Children's Hospital that decided they wanted to contribute something.

“They were incredible," Courtney Cooley said. "They answered all of our questions night and day, the quality of care... I just can’t express enough how thankful we were for all of that.”

Ellie, the oldest child, had some urinary issues that landed her at the hospital during her first year of life. After about a year of seeing a specialist, she was back to being a healthy kid and when the family decided words couldn't express their gratitude, they decided a benefit race could.

“So I came up with this idea to give back," Cooley said. "My family has been kind of a running family always."

Cooley founded the 5K Family Fun Run in 2012 and all the money went to the Peyton Manning Children's Hospital.

However, after the first year of the race, their youngest child, Lilly, started having severe health issues.

“She was not able to put weight on her legs after she woke up and after naps," Cooley said.

After countless tests, doctors diagnosed Lilly with asthma, celiac disease and juvenile rheumatoid arthritis.

“The more I read about arthritis, especially in kids at her young age, the more overwhelming it became," Cooley said.  “With Ellie (the race) was just a way to give back and give our thanks. We felt for the families that were there, you know having to go through surgeries and procedures and stuff like that... and then we slowly became one of those families.”

The arthritis continued to spread throughout Lilly's body for the next several years and by 2016 it was affecting her knees, arms, skin and neck.

“She could not even tilt her head back to wash her hair, just do simple daily task," Cooley said.

After facing the possibility of paralysis, the family made the tough decision to put Lilly on low-dose chemotherapy shots weekly. The shots weaken her immune system, but at this point, the disease is not spreading.

“Just to be able to see her go outside and play and be a kid again brings so much joy to my heart," Cooley said. "I’ve had so many happy tears this spring and I’m just like, ‘why can’t it always be like this?'”

Cooley and her family said when they started the race six years ago it had a special meaning, but as Lilly continues her medical battle, the race means something more than they ever dreamed or hoped it would.

“I do believe some things happen for a reason and I believe we were led to Peyton Manning Children’s Hospital to take good care of Ellie, but also too someday we would need that for Lilly," Cooley said. "And just having that comfort in how good they took care of Ellie, knowing we had somewhere to go when (Lilly) started struggling was really important to us... It’s just amazing how it ended up working out that way.”

The 6th Annual 5K Family Fun Run is this Saturday, April 22 at 8:30 a.m. at Butler University. Walk-ups are welcome and registration is open from 7:30 a.m. to 8:15 a.m.

The money raised this year will go toward a themed room at the hospital. Lilly and Ellie chose a pirate theme because that is their favorite ride at Disney World.

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