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updated: 3/17/2013 2:40 AM

Van contest focuses on people with disabilities

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  • Video: Story of Cammy Can Babiarz

  • Video: Story of Courtney Kestner of Lombard

  • Video: See National Mobility Awareness Month "Local Hero"

  • The Babiarz family of Wheaton is trying to win a wheelchair-accessible vehicle to transport daughter Cammy.

      The Babiarz family of Wheaton is trying to win a wheelchair-accessible vehicle to transport daughter Cammy.
    Courtesy of Babiarz Family

  • Often working with the Chicago Bears in his post as a founding member of the Gridiron Alliance, a charity that supports young athletes with catastrophic injuries, Steve Herbst coaches sports and remains active with several community organizations. The father of twins, Jack and Grace, the Palatine resident is vying to win a new wheelchair-accessible vehicle.

      Often working with the Chicago Bears in his post as a founding member of the Gridiron Alliance, a charity that supports young athletes with catastrophic injuries, Steve Herbst coaches sports and remains active with several community organizations. The father of twins, Jack and Grace, the Palatine resident is vying to win a new wheelchair-accessible vehicle.
    Courtesy of Gridiron Alliance

  • Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, poses Friday with his old van.

       Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, poses Friday with his old van.
    Bob Chwedyk | Staff Photographer

  • Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.

       Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.
    Bob Chwedyk | Staff Photographer

  • Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.

       Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.
    Bob Chwedyk | Staff Photographer

  • Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.

       Steve Herbst, National Mobility Awareness Month "Local Hero" contestant, demonstrates Friday how he gets in his handicap-accessible van.
    Bob Chwedyk | Staff Photographer

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  • Born with severe cerebral palsy and other disabilities, James Fulkerson started using a stroller wheelchair last fall at age 3. Parents Stacy and Jeff Fulkerson of Schaumburg are among the families hoping to win a wheelchair-accessible vehicle as part of a Mobility Awareness Month contest.

      Born with severe cerebral palsy and other disabilities, James Fulkerson started using a stroller wheelchair last fall at age 3. Parents Stacy and Jeff Fulkerson of Schaumburg are among the families hoping to win a wheelchair-accessible vehicle as part of a Mobility Awareness Month contest.
    Courtesy of Fulkerson family

 
 

Only 14 when he was paralyzed playing football, Steve Herbst of Palatine learned how to drive using mechanical controls for his hands.

"I've been using them for 25 years. That's the only way I've ever driven," says Herbst, who would drive to his job as a manager in technology for Allstate Insurance, to meetings of community organizations he supports, to frequent practices for several sports teams he coaches, and who would chauffeur around his twins, Jack and Grace.

Now 46, Herbst says he recently lost the strength needed to man the hand controls on his 2004 Toyota Sienna.

"It gets insane: the schedule, the suburbs, the whole deal. If I can't drive, it's difficult," says Herbst. "I need a new minivan."

Herbst is one of hundreds of contestants vying to be declared "Local Heroes" during National Mobility Month and win a vehicle that gives freedom to people with disabilities. Picking winners across the United States and Canada is not easy.

"Do you want to be a judge?" jokes Dave Hubbard, executive director and CEO of the National Mobility Equipment Dealers Association, which will give away three wheelchair-accessible vehicles at the end of May. Local Heroes are defined as people who volunteer, educate, advocate, achieve or persevere.

Finalists will be limited to the top 5 percent of vote-getters in the online contest at mobilityawarenessmonth.com, which concludes on May 10. Entries are accepted until May 3. A panel of health care experts will select three winners of the vehicles, valued at a minimum of $40,000 each.

Last year's inaugural contest drew 1,700 applicants, 1.2 million votes and 2.6 million website visitors.
"It says there's a lot of need out there," Hubbard says.

Co-workers, friends and his wife, Sue, have been driving Herbst to work, but a new van would enable him to remain "active in his community helping improve the lives of others," his entry says.

The 2002 handicap-accessible van used by Laura Schultz of Woodridge still accommodates the wheelchair for her 23-year-old daughter, Krystina, who suffers from a rare chromosome disorder that has left her with severe physical and mental disabilities. But it no longer can be the family vehicle now that her husband, Jerry, is blind and uses a wheelchair because of complications from multiple sclerosis.

Her daughter Rebecca, 17, also needs a wheelchair when her MS flares up. Simple trips are now complicated.

"Everything has to be planned," says Schultz, 50, who works part time in a medical office.

Lombard's Deborah Dobbs, 59, must lift her 65-pound daughter, Courtney Kestner, from a wheelchair to a back seat in the family's 2003 Chevy Ventura minivan.

"This is what I have to do to get Courtney to the doctor, and it is very dangerous," Dobbs says. "I have arthritis and a hernia from lifting her."

The 16-year-old sophomore, who has cerebral palsy and is enrolled in the special education program at Glenbard East High School in Lombard, doesn't speak and is scheduled for more surgery soon. Rick Gentry, the girl's godfather, lives with Dobbs and supports the family, but he recently went on disability leave and is on the waiting list for a new kidney, Dobbs says. Her other child, a 34-year-old man with autism, lives in a group home for people with disabilities.

Without a van equipped for a wheelchair, Stacy and Jeff Fulkerson of Schaumburg must fit their 3-year-old son, James, into a rear-facing car seat in their 2008 Dodge Caliber. James suffered a stroke in utero and was born with severe cerebral palsy and other ailments. He eats through a tube in his abdomen, suffers seizures and can't swallow, which means that his mouth needs to be suctioned often to keep him from choking.

"You find me pulling over often," Stacy says, explaining how much easier it would be to monitor and suction her son if he were sitting in his wheelchair in an accessible minivan.

Jackie and Bill Babiarz of Wheaton also have a family car that no longer handles their family. Car seats for Cammy, who just turned 4 and has lost the ability to sit without support, and her 2-year-old sister, Ryan, take up the entire back seat, and Cammy's wheelchair fills the trunk.

"Our car is getting so small, we can't get anything else in there," Jackie says. Nicknamed "Cammy Can," their daughter is no longer able to say mama and dada or feed herself because of the debilitating effects of Rett Syndrome, a rare nervous system disorder that reverses developmental gains.

Born with hydrocephalus, a buildup of fluid on the brain, Georgette Guy of Westmont wasn't expected to live past age 12, says Dawn Guy, who has been caring for her baby sister for the last 41 years. While Dawn Guy says in her contest entry that her family has put their faith in "a higher power," moving her sister would be easier with a specialty van.

Also defying life expectancy, Meagan Seals of Elburn is now 3 years old. Born with a rare condition called encephaloceles, part of her brain formed outside of
her skull and she has severe physical and mental disabilities. Parents Luellen and Scott Seals received a wheelchair donated by their church, but note in their contest entry that "we are in need of a van for her chair, and with all her medical bills, we are unable to get one on our own."

Making a car suitable for a disabled adult might be as simple as adding a few hundred dollars worth of hand controls, says Hubbard, whose not-for-profit NMEDA represents about 600 dealers with a goal of "expanding mobility options for people with disabilities." A minivan with a wheelchair ramp starts at about $40,000 and making those vehicles suitable for drivers with disabilities can more than double the cost, he adds.

"One of the heartbreaks is that many of the people who need our vehicles can't afford them," Hubbard says. While the auto industry does not keep statistics on the aftermarket changes to vehicles, Hubbard estimates that 14,000 to 15,000 new minivans are outfitted each year and maybe three times as many older vehicles are modified. About 18 million people in Canada and the United States have mobility issues.

While only three contest entrants will win vehicles, Hubbard says last year's contest raised attention that allowed a bit of unexpected happiness when several other people were able to raise the funds needed to buy vehicles that allowed them to be mobile.

To apply as a contestant, vote or find out more about Mobility Awareness Month and the contest,
visit mobilityawarenessmonth.com.

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