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Behind the Wheel - A Story of Independence

Shannon O’Brien has a look of concentration as she maneuvers her power chair into the van. Today is her last day of driver rehabilitation at Marianjoy. “I’m taking the road test today,” she says softly. “If I pass, it will be one step closer to having the state help me with adaptive equipment for my own vehicle and then I’ll be able to drive independently.” As she comes to a stop on a small hydraulic platform where the driver’s seat would be, she is lifted slowly into place.

Shannon has from Spinal Muscular Atrophy (SMA) – a rare, motor neuron disorder that causes muscle degeneration throughout the body. In more severe cases, swallowing and feeding are difficult and life expectancy isn’t more than a few years. In Shannon’s case, her form of SMA is less severe – she was diagnosed with type III SMA at age 2. She could walk until age 11, but now has limited mobility and uses a powered wheelchair to get around which she controls with her hands.

This isn’t Shannon’s first time at Marianjoy. She came for a driver evaluation when she was sixteen. “I went for two sessions but funding for a vehicle of my own fell through, so I didn’t pursue it any further. Once I learned that the state may help with adaptive equipment for a vehicle by getting licensed and meeting certain criteria, like having a full time job and needing to get their on my own, I immediately looked into coming back to Marianjoy.”

While her condition may have affected her mobility, it hasn’t slowed down her drive or ability to succeed. Since January 2010, Shannon has worked for Families of Spinal Muscular Atrophy (FSMA), a non-profit organization that is dedicated to treatment and cure of the disease. She works for FSMA full time as a Family Support Administrator. Her responsibilities include sending out care packages and information to families and general office work. The organization has raised over $50 million for research and has 30 chapters and over 70,000 members across the country.

Prior to her employment as FSMA, she graduated from the University of Illinois in Champaign with a degree in Speech and Hearing Science. But her studies are far from over. “I’m applying to graduate school to become a speech language pathologist.”

With a simple press of a button on a touch screen, the vehicle starts; one of the many elements controlled by the touch pad. On one side of Shannon sits a small yet highly sensitive wheel which is used to steer the state-of-the-art van. “It takes as little of 3.2 ounces of pressure to turn the wheel,” explains Anne Hegberg, one of the certified driver rehabilitation specialists. “An individual with little upper body strength can easily steer the vehicle using the wheel.” On the other side of Shannon sits a small box with a joystick. When pressed forward the van accelerates and when pulled back the brakes are applied.

The new van, which arrived in early January, contains all of the latest technology that enables a person with a disability to drive, even those with functional limitations. Funds for the vehicle were provided by a former patient, Robert Oakes, and a grant from the American Recovery and Reinvestment Act. “I’ve already ordered my own vehicle, customized specifically for me,” O’Brien smiles. “The driver rehabilitation program at Marianjoy is incredible. No one else offers a program like this.”

Shannon turns the van onto the road and slowly drives away with Anne seated to her right. Later that day, Anne passed on the good news. Shannon had indeed passed the driving test.