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Saturday, Oct. 25, 2014

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

By Amy Donaldson, Deseret News

Published: Sun, June 22 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.

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.

Understanding their daughter’s mind was a much more difficult proposition than helping her to tackle physical challenges. Thankfully, JulieLynn’s mom is both creative and relentless.

“Anita is like MacGyver,” said Joe, referring to a fictional but resourceful character from the 1980s television show with the same name. “She says, ‘Let’s try this. Let’s try that. How about this?’ We started realizing she can do this, she can spell words on her hand.”

She can communicate other ways, like using electronic devices or pictures to make choices. But most of the time, even in school, she spells out her thoughts on the outstretched palm of just about anyone willing to listen. Teachers determined she was on grade level in most subjects, and just about on grade level in math.

What the adults in her life learned is that while JulieLynn couldn’t talk, she had a lot to say.

“She wants to be mainstream,” he said of being in a regular elementary school classroom. “The goal with all education is to see how far we can get her to go. The goal is to find out how we can inspire her.”

In doing so, her parents have found it’s actually JulieLynn who does most of the inspiring. When the conversation turns to how she’s training for the upcoming Ragnar Relay, she makes sure her mom, who is a rather reluctant runner, is included in the training.

Anita’s mouth drops open in surprise as JulieLynn spells out why she wants her mom to run with her in the Fairy Tale 5K at Thanksgiving Point the week before the relay.

“Make her be accountable to be healthy,” Anita said her daughter spelled on her hand. She looks at her daughter, who bounces with approval and gives her mom a high five.

For the Reardons, being healthy means they are able to do more for their daughter. She relies on them in every way, and they want to be there for her as long as possible.

It was Joe who realized the physical demands they faced first. About 50 pounds overweight, he began running in January 2012.

“For me, (running) has been great,” he said. “I just said, ‘This is no longer acceptable,’ ” he said. “So I started running in the morning three or four days a week.” He found that running didn’t just help him physically, it soothed him mentally and emotionally.

“I would leave really stressed and come home feeling so much better,” he said.

He began pushing his daughter because, like her parents, she loves being outside and meeting new people. He’s pushed her in themed 5Ks like they did Saturday, as well as competitive races including half marathons. Most of the time, JulieLynn walks some portion of the race, usually near the finish line, either on her own or with a walker.

She’s been involved in physical therapy at Neuroworx, a company that specializes in rehabilitation for spinal injuries, for years and recently began walking with the assistance of a robotic suit. Just last week she walked over a mile, with the help of the device.

It’s the Neuroworx team that will allow JulieLynn to run sections of three legs, just like any other runner would do.

JulieLynn isn’t just participating in the Ragnar Relay with the Neuroworx team so she can take part in the fun. She has a message for those who might see her struggling to communicate or walk.

“Just because some of us can’t talk doesn’t mean we can’t think,” she spells on her mom’s hand. “I love to be included. Don’t worry about saying the wrong thing. We’re the same as you. We say wrong things too.”

JulieLynn is so pleased with her mom’s interpreting, she pulls her mom close and they touch foreheads, their eyes locked on each other, grins on their faces.

This isn’t the first time JulieLynn has challenged herself in a huge way to show other people just how limitless life is, even for her.

She participated in a triathlon a couple of years ago, and afterward, she had a message for her grandpa, who had just been diagnosed with an aggressive prostate cancer.

“She told my dad, ‘Now you can stop being mad at God for making me this way,’ ” Anita Reardon recalled.

Adds Joe, “He was frustrated with God. He’d ask, ‘Why did you do this? Why did you make her life so hard?’

And then Anita finishes the story, “She said, ‘Your anger is going to keep you out of heaven. … I can do things. You don’t have to be mad. I’m this way for a reason.”

Her grandfather was so moved, he made peace with his anger. He passed away three months later.

JulieLynn wants to be around people all the time, even people she knows are afraid of her disabilities. It’s another reason she relishes race days.

She reaches for her mom’s hand to answer a question posed to her parents.

“Why do all of this stuff?” Anita asks of her daughter. “What do you want people to know.”

And JulieLynn, even though she’s tired of talking to strangers, moves her fingers quickly across her mom’s palm.

“Tell them not to be afraid of us,” Anita said as she looks at her daughter. “If they know us, they’ll like us. We can’t be known if we’re out of sight.”

Twitter: adonsports

EMAIL: adonaldson@deseretnews.com

Recommended
1. Interloper
Portland, OR,
June 23, 2014

Though he has gained wide attention for something he is not adept at - politics - JulieLynn had the surgery neurosurgeon Ben Carson pioneered, a hemispherectomy. If a section, usually half of the brain, is removed, continuous seizures in children can be prevented. The tradeoff is the opposite side of the body will be weakened, much as in stroke victims. But, because of their adaptability, young children usually retain most or all of their intellectual ability, with the remaining brain taking over for the part surgically removed. Carson redeveloped the hemispherectomy for modern use.

2. Whoa Nellie
American Fork, UT,
June 23, 2014

Thank you Amy, for another inspiring human-interest story.

3. nanato12
Spanish Fork, UT,
June 23, 2014

Read the book"Out of My Mind" by Sharon Draper. This little girl would benefit from a computer like the one the little girl has in the book. Everyone should read this book, as it shows that we underestimate many handicapped people.