Daily Independent (Ashland, KY)

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September 11, 2013

Mark Maynard: Fighting back for Harper: 9/12/13

ASHLAND — Here’s a cause you can get behind. Derrick Webb, who works in Industrial Relations for AK Steel, is fundraising for more research on Angelman’s Syndrome to help his 1-year-old daughter, Harper Randi Webb, who was recently diagnosed with the disorder.

Webb and his wife, Johnna, the financial controller at Three Rivers Medical Center in Louisa, learned recently their daughter has Angelman’s syndrome, a genetic disorder with chromosome 15. The diagnosis came after months of worry, anxiety and tears from the young couple.

“It’s definitely a life-changer,” Derrick Webb said. “Me and my wife are both committed to attacking it. It’s the only way to look at it.”

The Webbs, who also have a healthy boy, Hunter, 4, took their daughter for a six-month checkup and the pediatrician started asking questions because of what Harper wasn’t doing. They put her in physical therapy and eventually went to a neurologist, who took 13 tubes of blood. Twelve of the 13 came back good, but the 13th showed some chromosome levels were off. They were referred to Cincinnati Children’s Hospital, and after a battery of tests learned she had Angelman’s.

“At the time she was the youngest patient in Cincinnati Children Hospital history to be diagnosed with Angelman’s that early,” the father said.

There is no cure for the disorder. It is a neurogenetic disorder characterized by severe intellectual and developmental disability, sleep disturbance, seizures, jerky movements (especially hand-flapping), frequent laughter or smiling and usually a happy demeanor.

The father said Harper definitely has that happy demeanor and is always smiling.

“Any time she sees you, she’s smiling,” he said. “My wife and I are both believers. We had her anointed at church. We’ll try to make the best of it.”

Dad is planning a fundraising golf tournament in May to raise funds for research of Angelman’s.

“Because it’s so rare, the funds they get for research are very small,” he said. “We’re praying for a cure.”

For more information, call him at (606) 571-6205.

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I recently wrote a story about Bill Heaberlin, the longtime supporter of Russell sports and the timekeeper for Red Devil football games.

Well, Randy Hunley, one of Bill’s former Catlettsburg Phillie Little League players from 1964, came by the office with a photograph of the team that accompanies this column.

There’s something special about looking at these old Little League photographs and some of the faces of the kids who today are adults. Some from this particular Phillies team have even passed away, including Bill’s oldest son, Bob Heaberlin.

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I’m already looking forward to the next leg of Ashland’s festival fun with the start of Poage Landing Days next weekend.

Festival director Phillip Stewart has been busy getting everything in place for another good time.

Summer Motion, Poage Landing Days and the Winter Wonderland of Lights bring people into Ashland for some good times.

The reputations of these events make it tough to top year after year, but it seems to happen anyway.

It takes a lot of work and dedication from teams of volunteers for it to work.

Support these festivals with your attendance.

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If you ever lived in the 45th Street area in Ashland, this weekend was made for you.

The 45th Street Area Reunion will commence at 4 p.m. at John C. Oliverio Park.

Chris Long, a longtime resident of the area, has organized the reunion for several years.

The neighborhood there is passionate about its past and future. There’s always a lot of good things to eat and some good fellowship, too.

Chris noted one of street’s oldest residents, Jack Hunt, passed away within the last year.

For more information, call Chris at (606) 369-3044.

MARK MAYNARD can be reached at (606) 326-2648.

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