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Draper girl hopes running Ragnar Relay will inspire others to reach out to those with disabilities

Published: Sunday, June 22 2014 8:10 p.m. MDT

Joe Reardon and Anita Reardon push their daughter, JulieLynn Reardon, during the Fairy Tale 5K at Thanksgiving Point in Lehi Saturday, June 21, 2014. In spite of being diagnosed with a severe form of epilepsy, JulieLynn Reardon is on grade level in most subjects.

Michelle Tessier, Deseret News

DRAPER — JulieLynn Reardon reaches for her mom’s hand impatiently.

Like most 11-year-olds, when she has something to say, she wants to be heard.

The only difference between JulieLynn and most other soon-to-be fifth-graders is that she can’t verbalize her opinions on her own. Instead, she spells them on the palm of her mother’s hand.

When Anita Reardon gets the sentiment correct, JulieLynn rewards her with a high-five. When she doesn’t, she waves her hands and they try again.

Finding a way to communicate with their daughter is just one of the ways Anita and Joe Reardon are unlocking JulieLynn’s potential.

Like most parents, the Reardons find challenging her is most effective when she chooses the reward. A few months ago, they asked JulieLynn what goal she’d like to set for this summer.

“She said, ‘I want to do Ragnar,’ ” said Anita Reardon, referring to the long-distance team relay race that begins in Logan and ends in Park City that takes place June 27-28. “I asked her why Ragnar, and she said, ‘Why not? I get to be outdoors, in the mountains, and I get to see so many different kinds of people doing what they love.”

Joe Reardon participated in the race last year, and he said he understands why she wants to be part of a Ragnar team. “They’re doing something hard,” he said, “and doing hard things, that inspires her.”

While the race may be difficult for the thousands of runners who are participating in this weekend’s Wasatch Back Ragnar Relay, it seems impossible for someone in JulieLynn’s situation.

“Technically, she’s a functional quadriplegic,” Anita Reardon said of her daughter who was born with a rare neurological condition called Hemimegalencephaly, in which one side of the brain is abnormally larger than the other, causing frequent and severe seizures.

“Right at birth they noticed some things,” said Joe Reardon. “She was having 400 seizures a day.”

Anita points out that even when she was pregnant, there were signs that they just misread.

“We thought she had a lot of hiccups,” Anita said of her pregnancy. “We realize now that they were seizures.”

Doctors told her parents they needed to remove part of her brain in order to control the seizures.

“There was really no other choice at that point,” said Joe. “She was having so many seizures. We wanted to wait until she was older, but that just wasn’t an option.”

When JulieLynn was 4½ months old, doctors removed part of the brain that was abnormally large. She spent the first 6½ months of her life in a hospital. Now she could go home, but instead of seizures, the blue-eyed girl deals with the effects of partial paralysis and intellectual disabilities. Her mom likens it to what a person deals with after a stroke. Doctors were unsure what JulieLynn would be able to do, unable to tell her parents what her life would be like.

“We didn’t know what she’d be able to do so we just started exposing her to whatever we could to try and see what she was capable of,” Anita said.

Every day the couple finds new ways to challenge their daughter, to test her physically and intellectually. She sat up on her own for the first time on June 1, 2007 — right before she turned 4.

“That’s an amazing progression,” Joe Reardon said.

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