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Pleasant Grove student runs at full speed to face life's challenges despite tough start

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Overcoming the odds...

By Alex Wimsatt

 MOUNT WASHINGTON - On the surface Pleasant Grove Elementary third grader Wesley Hill looks like any ordinary eight-year-old boy, but behind his smile is an extraordinary story. 

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When he was 10 months old Wesley was diagnosed with leukodystrophy, a rare genetic disorder that affects the central nervous system, hindering overall development.

When Mike and Renee Hill learned of the prognosis they were told there was a good chance the disorder would get progressively worse as their son got older.

"We were devastated," Renee Hill said. "That was a hard day."

 The disorder slowed everything from Wesley's muscle growth and motor skills to his sight. 

Every facet of Wesley's life has been affected by the disorder.

Wesley didn't crawl until he was nearly three years old, his speech was delayed until recent years and as a preschooler he was bound to a wheel chair.

"He was behind in all his markers," Mike Hill said. "I wondered if he would ever be able to walk."

With the help of a walker Wesley took his first wobbly steps when he was about four years old.

"I almost cried when I saw him walk for the first time," Renee Hill said.

"I couldn't believe it," Mike Hill added. 

Though leukodystrophy is generally a degenerative disorder, Wesley has made remarkable progress through constant therapy.

Sydney Hill, who has helped take care of her little brother over the years, said Wesley didn't say much when he was younger. "Now he won't stop talking," she said with a smile.

Besides learning to process his words quicker and speak more clearly, Wesley has made impressive strides physically. 

For four years Wesley has been on the Bullitt County Dolphins swim team and over the summer he joined his sister on the Bullitt East cross-country team 

In October he ran his first race, the Maryville Elementary Triple Crown 2K, where Wesley's dad, sister, teammates and friends ran with him to show their support.

Because Wesley's sight and body have not fully developed, he has a hard time navigating race courses on his own.

To make sure he doesn't hurt himself, Sydney Hill runs with Wesley in each of his meets, which means she not only runs her own races, but her brother's as well.  

She doesn't mind though. 

"Wesley's one of the best things that ever happened to me," Sydney Hill said.

Renee Hill thanked God and the outpouring of prayers from their Pleasant Grove Baptist Church family for the progress Wesley has made over the years.

 "Wesley is a miracle child...Not many kids with leukodystrophy go from being in a wheel chair to running cross-country," Renee Hill said. "He did a lot of the hard work, but it would not be possible without God's blessing to our family. I'm such a proud mama. Both of my children are the best."

Mike Hill added that Wesley's strong will and perseverance helped him get to where he is today. 

"If he had a different attitude he would be a lot further behind than he is," Mike Hill said. 

If you ask Wesley if he considers himself disabled, he'll emphatically tell you 'no.'

"He'll fight you if you ever try to help him with anything," Mike Hill said. "He's very independent." 

Therapist Ann Flint, who has spent five years helping Wesley fine tune his motor skills at Louisville's Kids Center for Pediatric Therapies, said he has made great strides since he first came to her in a wheel chair. 

"Honestly when I met him I didn't think he'd be this far this fast. It's almost hard to believe because he was so impaired when he came to us," she said. "Wesley is such a hard worker...That's really been the key to his success." 

After learning of Wesley's extraordinary progress and unwavering spirit during a tour of the kids center, Director of Marketing & Development Jim Littlefield-Dalmares made him one of the center's spokespersons.

"He's an amazing kid," said Littlefield-Dalmares. "Between his giggle and his infectious smile and his can do attitude he's an inspiration."

Littlefield-Dalmares said Wesley is a beacon of hope, especially to the children who attend the center and their families.

"Our motto is, 'we see the ability in disability,' that's what we try to teach our children and families," he said. "It's great to share Wesley's story and show them what's possible."

In recent months Wesley has made countless appearances on behalf of the kids center and he's been seen everywhere from print to television. 

Asked if he thought of himself as a celebrity, Wesley said with a smirk, "That's a good one." 

While Wesley may have been born with a genetic disorder, he'll tell you he's just a normal kid.

Like his father, Wesley loves electronics. When he grows up he said he wants to be a "computer person"

When he's not at the kids center, inspiring others with his story or sitting in class, Wesley likes watching his favorite TV show, ABC's "Wipeout," playing video games, riding bikes and go-carts, playing with his friends and of course running and swimming. 

Anyone who would like to run with Wesley can join him in the kids center's two-mile Walk and Roll for Kids, which is the non-profit organization's biggest annual fundraiser.

In addition to being a spokesperson for the Walk and Roll for Kids, Wesley will have his own team, which everyone is invited to join.

The event takes place Saturday, May 19, in Louisville. 

Teams and individuals are welcome and while there is no cost to enter, donations will be greatly appreciated. 

All proceeds will go to making sure no children are turned away from the kids center because their families can't afford to pay. 

Those who would like to participate in the Walk and Roll for Kids or make a donation can visit www.kidscenterky.org.