LOMBARD – When Pearl Gannon took the stage at the Ms. Wheelchair Illinois competition last month, she didn't have a speech prepared, but she knew what needed to be said.
"I have always wanted to go out and speak about disabilities, awareness and positive mental health," Gannon said she told the judges. "[Because] when you have a disability that gets worse over time, you deal with that depression."
Gannon, 27, a Lombard native and a former Villa Park resident, was crowned Ms. Wheelchair Illinois 2014 on March 22, and will now use her platform to raise awareness about issues affecting individuals living with disabilities, including societal prejudices.
"I want to get it out to our society that even though I have a disability, I am mentally here," Gannon said.
Gannon, a 2005 Glenbard East High School alumna, was diagnosed in December 2012 with Charcot-Marie-Tooth disease, a common inherited nerve disorder that causes problems with the sensory and motor nerves – the nerves that run from the arms and legs to the spinal cord and brain.
"Basically, your nerves die and then your muscles atrophy and waste away," Gannon said. "It affects the calf muscles first. Within the last year, I've lost a centimeter and a half in both of my calves."
Symptoms for Gannon began at 8 years old and progressively got worse. She was originally treated for Reflex Sympathetic Dystrophy Syndrome, but despite physical therapy, the symptoms got worse.
"It just never got better, and once I got to high school, things got a lot worse," Gannon said. "I was still in regular PE and was falling down. They would have to come with a wheelchair to get me."
Sport and support
Despite her affliction, Gannon has maintained an active lifestyle. She is a starter and the 2013-14 MVP for the Rehabilitation Institute of Chicago Sky Women's Wheelchair Basketball team. Gannon is also active in adaptive water skiing and wakeboarding.
"Being active in sports has helped me so much mentally," Gannon said.
Kathy Reinhardt, head coach of the Sky, said she admires Gannon for her endurance and spirit.
"I have a lot of faith in her," Reinhardt said. "She is not afraid to overcome the disability that she has."
Gannon's CMT means that she is often more fatigued than other players on the court, but with the aid and tutelage of Reinhardt, who has multiple sclerosis and can relate, Gannon has continued to thrive.
Gannon was originally informed about the Ms. Wheelchair Illinois competition by former winner and fellow wheelchair basketball player Danielle Austin. Initially hesitant to enter, Gannon got the nudge she needed from her biggest advocate, her 10-year-old sister Abby.
"I can't say enough positive things about her," Gannon said. "She is my biggest supporter when it comes to my disability and will do anything I need that I can't do."
Ms. Wheelchair America?
Gannon has about 10 speaking engagements lined up this year, and will begin campaigning to raise the necessary $2,000 to compete in the Ms. Wheelchair America competition in August. While Gannon would love to win, she is more enthusiastic about getting the opportunity to meet the other state winners.
"It's really going to be about learning everyone's platforms and how we can use that in our own states to raise awareness," Gannon said.
"She's going to be a fine representative for Illinois," Reinhardt said. "I am extremely proud of her. This is going to be a challenge for her endurance-wise, but I think over the course of playing basketball, she's learned how to pace herself and that is what she is going to do."
Gannon's long-term dream is to compete with the USA Women's Wheelchair Basketball Team in the 2016 Paralympic Games, but she knows her CMT may hinder that.
More importantly, Gannon is studying to be a social worker focused on early intervention.
"For me, getting a degree is more important because that way I can make a difference in people's lives," Gannon said.
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2.6 million: Number of people worldwide affected by Charcot-Marie-Tooth disease, including one in 2,500 people in the United States, according to the Hereditary Neuropathy Foundation.
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To learn more about Pearl Gannon's fundraising efforts and speaking events, visit facebook.com/mswheelchairillinois2014 or contact Gannon at firstname.lastname@example.org.