Just like any other kid, Caleb got a kick out of being shown around the garage at the Edmond Fire Department’s Fire Station 1. The 13-year-old’s eyes were wide with excitement when a firefighter showed him some of the tools used to fight fires.
Unlike most other kids his age, Caleb was confined to his wheelchair. But he is not defined by it, said his mother, Marlene Pendley.
She said in 2008 she learned Caleb has Duchenne Muscular Dystrophy (DMD).
“We saw some signs prior to that,” Marlene said. “Something wasn’t right.”
Caused by an absence of dystrophin, a protein that helps keep muscles intact, DMD is a genetic disorder characterized by progressive muscle degeneration and weakness, according to the Muscular Dystrophy Association.
DMD primarily affects boys, but in rare cases it can affect girls. Symptom onset is in early childhood, usually between age 3 — when muscle weakness can begin — and 5. The weakness first affects muscles of the hip, pelvic area, thighs and shoulders, and later the voluntary muscles in the arms, legs and trunk. By the early teens, the heart and respiratory muscles are affected.
In 2009, Caleb stopped walking, Marlene said.
The Muscular Dystrophy Association supports week-long summer camps, where kids like Caleb with neuromuscular disease discover a world created specifically for them, and they meet kids sharing the same needs and experiences, Marlene said.
“He gained a lot of confidence,” she said. “When he first went to camp he came back a different kid. He came back stronger. He realized he wasn’t really all that different.”
Being at the fire station and the upcoming MDA telethon are a time when the community comes together to support kids like Caleb and to raise awareness about muscular dystrophy, Marlene said. MDA also has been a source of emotional support for her entire family, she said.
A star-studded celebrity lineup will appear on the MDA’s 48th annual telethon Labor Day weekend beginning at 8 p.m. Sept. 1 on ABC television stations across the country.
Called the MDA Show of Strength, it will feature: Ryan Seacrest; Backstreet Boys; country stars Luke Bryan, Darius Rucker and Lee Ann Womack; “Glee” star Matthew Morrison; Enrique Iglesias; Paula Abdul; teenage pop sensation Austin Mahone; hip-hop dance crew Jabbawockeez; “American Idol” runner-up Jessica Sanchez; Kenny Loggins; blues rock band Vintage Trouble; and Universal recording artist and star from the “The Voice” Chris Mann.
“This year, we’ll tell a powerful story of the progress we’re making and breaking developments under way in the fight against muscle disease,” said MDA President and CEO Steven Derks. “We want to share our vision of hope that new life-saving treatments are on the horizon as told through the eyes of courageous people fighting various neuromuscular diseases.”
Each year during the Labor Day weekend, Edmond firefighters are out at various city intersections where local residents drop donations into their boots. Fire Maj. Gary Dill was with Caleb to spread the word about the telethon.
Dill said firefighters will be out that Saturday and Sunday for sure and possibly Friday as well at high traffic areas like Second and Bryant, 15th and Bryant, 15th and Broadway and Kelly and Edmond Road. The money collected goes for research and things like Caleb’s wheelchair, counseling and the MDA camp, Dill said.
“We want to be out there to raise as much money as possible for those programs,” he said.
Local MDA coordinator Briana Steelman said it is exciting to see Caleb have a great time at the fire station and to promote the fill the boot campaign. MDA is helping about 2,000 families in the Oklahoma City metro area, Steelman said.
For more information about the Muscular Dystrophy Association and the telethon visit mda.org.
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