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updated: 3/30/2014 8:08 AM

Community helping Schaumburg parents of boy with severe disabilities

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  • Video: Seeking Disability Van


Seeing the ultrasound image of a spine twisted around a tiny, horribly deformed 15-week-old fetus, Jeff and Stacy Fulkerson of Schaumburg knew their first son, Jackson, would never get a shot at life. His cremated remains fill a small urn on a shelf in their living room.

The parents' quest now is to coax the most out of life for their second son, James, whose life with multiple disabilities is inspiring a community effort to get the family a wheelchair-accessible van.

Taking the 4-year-old to his morning special-education preschool at Hellen Keller Junior High in Schaumburg requires Stacy to dress James for the cold weather and lift his limp, 44-pound body into his car seat in the back of her compact Dodge Caliber. His wheelchair is a different story.

"I have to take off the wheels to fit it in my trunk," says Stacy, who then has to reassemble the wheelchair outside in the school's parking lot. Jeff's Ford Edge is bigger, but if Stacy drove it, she wouldn't be able to reach James when fluids build up in his nose and throat during the short drive.

"I suction him at stoplights," the mom says. Since James can't swallow, he travels with a portable suction machine.

"We can suction him as much as 20 times an hour or as few as five times an hour," Stacy says as she inserts a thin plastic tube into her son's nose until it reaches his throat.

Having suffered a stroke during Stacy's first trimester, James was born by emergency C-section on Aug. 29, 2009, and spent his first two months in the neonatal intensive care unit. Diagnosed with a chromosome disorder, epilepsy and quad cerebral palsy, James can't move his limbs, sit, talk or eat. He has a blood-clotting disorder and takes several medications. Small movements he made as a baby were wiped out after his first seizure at 3 months old, his mom says. Every fall, a bout of pneumonia sends him to the hospital.

"You name it, you've got it, right, bud?" Jeff says as he bends near James to deliver a soft "nose bump," which is the closest the pair can come to a father-son high-five.

"Every five minutes, this little device shocks his brain," Stacy says of an implant in the boy's chest that delivers electrical shocks to control the seizures caused by his epilepsy. He's tethered to a monitor all the time. Therapists cheer the slightest advances he makes in moving his head, but he has no control over his muscles.

"For the first couple years of his life, he'd sleep with his eyes open," his dad says, explaining how James still can't shut his eyes fully. "If his arm is limp, he's sleeping."

An army of friends and family are helping the couple organize the "Rolling for James" fundraiser on a Sunday afternoon, April 6, at St. John Brébeuf Church in Niles. They are raising money to buy a van, and modifications for wheelchairs can double the price. See for details, or visit his Fans of James Facebook page.

"We've had so much help," Stacy says, expressing gratitude to some local and national charities, friends, relatives and others. Fundraiser coordinators say the Fulkersons are inspirations.

"I think they are some of the strongest people I've ever met," says Christy Brown, a longtime family friend who teaches kindergarten in Huntley. Brown accompanied Stacy on the first date with Jeff and says she was happy to have James as a guest at her own wedding.

"Everything revolves around James," says Brown, praising his parents' attitude. "I'm learning through them that things can be hard, but we can do it."

James is making progress, says Noel E. Nape, a teacher who worked alongside Stacy at the beginning of their teaching careers. "He recognizes me. He recognizes voices," she says.

The Fulkersons are insured through Jeff's job as a network specialist at Elmhurst College, where the couple married after Stacy graduated with a degree in early childhood special education. But they dip into their savings to pay all the deductibles, co-payments and expenses that insurance doesn't cover -- from diapers to extra suctioning machines to the nicer catheters they buy on eBay because they seem more comfortable for James.

"We think we can tell when he's happy or sad, but …," the dad says, letting silence linger before speaking of the frustration the parents feel when James seems out of sorts. "I would love for him to be able to tell us what's wrong. We really have no idea."

Having grown up in the suburbs (Jeff in Mount Prospect and Stacy in Park Ridge), the couple met online through AOL in the age of dial-up modems and envisioned having the families they had as kids. "Both of us wanted the standard two kids: one boy and one girl," Jeff says.

Her former career in schools as a special education teacher couldn't prepare Stacy for the round-the-clock care James requires.

"The hardest part for her is being on the other side of the table," her husband says.

Stacy, 34, and Jeff, 38, know their roles and responsibilities required to maintain the routine. "We are a very good team," Stacy says.

"People don't understand what Stacy and Jeff go through daily," Nape says.

James' seizures are far less frequent than they used to be. His vision improved recently to the point where he doesn't need glasses to watch children's shows on TV. He must hear well because he always cries at the start of the theme songs for two of those TV shows until the music is muted.

"He cries here and there and has some twitches," Stacy says. She sees subtle signs that "the progression is in the right direction."

The recent move from a crib to a "big boy bed" allows his parents to stand as they suction James during the night, and to store his oxygen tanks under the bed. The mural above his bed features funny monkeys and the line, "No more monkeys jumping on the bed," from a popular children's book.

Unable to imagine James even rolling over on that bed, the Fulkersons don't spend time thinking about how things could be different.

"It's just something that happened," Jeff says of the disabilities facing their son. "And we deal with it."