Against all odds: Genetic disorder doesn’t stop Bullitt County boy

| November 17, 2011
CHRIS CAHILL | contributing photographer Wesley Hill and Ryley Ortega became friends after running cross-country together.

CHRIS CAHILL | contributing photographer
Wesley Hill and Ryley Ortega became friends after running cross-country together.

At age three, Wesley Hill only understood a few dozen words.

The ever-grinning, blond-haired boy from Mt. Washington certainly did not recognize the terms doctors used in describing his leukodystrophy: destructive, crippling and degenerative.

Wesley was bound to a walker as a 3-year-old.

Wesley was bound to a walker as a 3-year-old.

Sometimes a little ignorance can be a good thing.

In the last five years, Wesley, now eight, has defined his life using his own terms and advanced in ways that have impressed his team of therapists and parents Renee and Mike.

“When I looked it (leukodystrophy) up on the Internet, I just started crying,” said Renee Hill. “I said, ‘Oh my gosh, my poor little baby.’”

A genetic disorder, leukodystrophy affects the brain and central nervous system and often manifests itself in progressive vision, coordination and developmental problems.

Against the odds, Wesley’s most dramatic improvement has come in the area of gross motor skills. After starting out in a wheelchair five years ago, he advanced to a walker and now treads entirely on his own power.

“Truly, it’s amazing…for him to be walking and talking,” said Ann Flint, an occupational therapist who has worked with Wesley for five years at the KIDS Center on Eastern Parkway. “Wesley is a very hard worker and I think that has a lot to do with his progress. A lot of it is his own motivation to do things.”

The KIDS Center serves more than 700 children and young adults each year through outpatient physical, speech and occupational therapy. Wesley visits the center twice a week for hour-long sessions.

Of all the milestones in Wesley’s young life none has been more moving than that which took place last month in an unlikely setting – a cross-country race.

After watching his older sister, Sydney, 12, run with the Bullitt East Cross Country Club, Wesley decided to give it a try.

The Hills, clockwise, from top left: Mike, Renee, Sidney and Wesley.

The Hills, clockwise, from top left: Mike, Renee, Sidney and Wesley.

Never mind that his vision problems make it impossible for him to focus on the ground immediately in front of him or enjoy a normal sense of balance.

And never mind that his core and legs suffer from decreased muscle tone that makes even walking difficult at times.

None of that mattered. Wesley wanted to run, so that is what he set out to do.

“We accepted him with open arms,” said Lenny Raley, who coaches the club team for runners in kindergarten through eighth grade. “We got him a uniform and wanted to make him as much a part of this as anybody.”

Wesley trained for six weeks before taking on his first 2K as part of a series of races held at Maryville Middle School. The course featured some rough terrain and hills that would test Wesley’s balance and his will.

When the race started, Wesley dropped immediately to the back of the pack.

He wobbled on unsteady legs and fell twice. Both times he got back up, but as the pack moved farther ahead it was clear that Wesley would not win this race.

Nothing, however, could stop him from crossing the finish line.

Time passed and eventually all of Wesley’s teammates finished. A most unusual thing happened next, though—they kept running.

Not one or two, but all 20-plus members of the team retraced their steps until they found Wesley.

Teammates joined Wesley as he finished a cross-country race last month at Maryville Elementary.

Teammates joined Wesley as he finished a cross-country race last month at Maryville Elementary.

“It was one of the neatest things I’ve ever seen,” said Mike Hill. “Everybody just went back to run with him.”

With a quarter mile remaining, Wesley found himself surrounded by an enthusiastic pack of teammates urging him on to the finish.

The 4-foot-3, forty-seven pounder, who had inspired his team just by coming out to training, was now having the favor returned as he plodded down the home stretch.

Onlookers cheered and choked up at the site of the elementary and middle school kids rallying around their friend.

“He was struggling and might not have finished,” said Mike Hill. “It was a big boost for him.”

Finally he crossed the finish line, coming in just under 17 minutes.

Dead last never felt so good.

An exhausted Wesley looked up to find one of his teammates approaching him.

Nine-year-old Ryley Ortega, who had earned a medal for her third-place finish in the girls’ elementary division race earlier that day, congratulated him on completing the course.

Then, without being prompted by a coach or parent, Ortega removed her bronze medal and placed it around Wesley’s neck.

“He worked so hard to finish,” said Ortega, a fourth-grade student at Pleasant Grove Elementary. “I thought he deserved a medal.”

Ryley Ortega (left) and Wesley Hill after Ortega gave away her third-place medal.

Ryley Ortega (left) and Wesley Hill after Ortega gave away her third-place medal.

“It makes me feel happy that he decided to run even though he has a little bit of problems,” she said.

Although the road ahead for Wesley will certainly be fraught with many more challenges, it is clear that he will not take them on alone.

His spirit and persistence have won over teammates, friends and family members who now live through both his struggles and triumphs.

“He’s a little fighter,” said coach Raley. “He takes the situation as it is and does the best he can.”

Watch Wesley walk (run?) the runway on Saturday at the KIDS Center annual holiday fashion from 2 to 4 p.m. at duPont Manual High School. Tickets are $5 at the door.

Contact columnist Chris Cahill at ccahill@voice-tribune.com.

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Chris Cahill

Comments (4)

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  1. Tracy Jo says:

    Your story was so inspiring. I am the mother of two children on the Autism Spectrum. I believe God has many less ones to show us through children like yourself. My son was diagnosed in 2003 with Autism. We were told he may never speak. Matthew, now 11 years old teaches himsel foreign language. Spanish is his favorite. I now lead a support group for families living with disabilities called REACH-IN. I will share your story with them.

    God bless to you all,
    Tracy

  2. Shane Popplewell says:

    It’s funny how kids at times are the ones that teach the adults about strength character and integrity. So proud of you Ryley! Love you! Uncle Shane.

  3. Gene Smith says:

    I’ve had the pleasure of watching Wesley grow up. I also got to be the leader of his Royal Ambassador group at church for a couple years. He is truly a special kid. Awesome story and Wesley….. Keep on running buddy!

  4. Todd Ruckriegel says:

    Great Story Chris. Very inspirational. As a future OT, I look forward to working with such determined kids like Wesley.