Wheelchair opens roads less traveled
Gift from nonprofit helps disabled woman lead a more mobile life
BY JENNIFER AMATO
Staff Writer

MIGUEL JUAREZ staff Larry Hardy, president of Rolling Thunder Chapter 3 of New Jersey, a POW-MIA veterans’ rights group, presented Robin Donnelly, who suffers from spina bifida, with a new electric wheelchair at her home on Friday.

The biggest thrill for Robin Donnelly this summer was going to Wal-Mart.“My husband said to me, ‘That’s a wheelchair, not a car,’ ” she said with a laugh. “I was so excited I don’t have to ask for rides, I don’t have to pay for a taxi.”

Donnelly, 39, born and raised in North Brunswick, is one of 70,000 people in the United States currently living with spina bifida. Spina bifida is a neural tube defect characterized by the incomplete development of the brain, spinal cord, and/or meninges, the protective covering around the brain and spinal cord, according to the National Institute of Neurological Disorders and Stroke (NINDS) Web site.

MIGUEL JUAREZ staff Robin Donnelly, who has suffered with spina bifida since birth, uses her new electric wheelchair on Friday, which was donated by Rolling Thunder, a POW-MIA veterans’ rights group.

“Things other people take for granted, like taking their kids to the park, to the Jersey Shore, to an amusement park [or] going to the corner store to buy milk, have become virtually an impossibility for me,” she said.

Her days of avoiding such activities came to an end Friday when Donnelly received an electric wheelchair from Rolling Thunder Inc. Chapter 3 of New Jersey, a nonprofit POW-MIA awareness organization.

“On Aug. 13, my husband, Vinny, and I went on the Dream Run motorcycle run to benefit spina bifida. ... The event was co-sponsored by Rolling Thunder, as Agent Orange has been found to have a direct link to the occurrence of spina bifida in the children of those exposed to it. While Vinny and I were at the picnic held after the run, an officer of local Rolling Thunder Chapter 3, Larry Hardy, who was there, came up to us and asked if Vinny was a Vietnam veteran, to which he replied, ‘Yes.’ Larry then asked me if I had spina bifida, to which [I] said, ‘Yes.’ He said, ‘Well, [I] noticed you earlier struggling to get up that hill over there by the restrooms. How would you like an electric wheelchair? That would make treks like that a whole lot easier for you, I imagine.’ ”

Donnelly told Hardy her insurance company refused to pay for an electric wheelchair because they believe she is capable of using a manual chair, even though normal, day-to-day activities are becoming more of a struggle for her.

“Just to see the smile on Robin’s face ... I turned to [board member] Bill [Fusco] and said, ‘We did good, bud.’ He said, ‘It’s better to give than receive,’ ” Hardy said.

Rolling Thunder accepts donations of well-kept electric wheelchairs to donate to war veterans or their immediate family members who suffer from debilitating disabilities.

“I can’t even put into words the amount of gratitude I have for Rolling Thunder. I think they’re such a great group of guys, they do wonderful work. ... I just think they’re fantastic,” she said.

Donnelly has been afflicted with spina bifida since childbirth, as it is diagnosed before or at birth due most commonly to a deficiency of folic acid, a common B vitamin, during pregnancy, according to the NINDS Web site. Although Donnelly had 18 surgeries by age 5, crawled until the time she was 6 and then walked with crutches before needing a wheelchair, she said that she had a normal childhood and was not usually discriminated against.

“I had as relatively normal a childhood as I could have had under the circumstances,” she said. “My mother faced a lot of opposition getting me into the school system at the time ... [but] I went through the public school system all the way.”

Although she missed out on high school dances, both her proms and sat on the floor during gym, Donnelly continued through grade school and graduated from Douglass College with a degree in journalism. She decided to work in public relations and got a job at St. Peter’s Hospital Community relations Department.

The one social problem she did encounter, however, was dating.

“It was always an obstacle, dating. I found my way around that. When I first started dating I met people through a CB radio. ... Most of the time before we were ready to meet in person, it didn’t matter at that point,” she said.

She met her first husband and had two children, Stefanie, 15, and Patrick, 11.

“Nobody really knew if I was able to have children,” she said.

However, four months after coming back from her honeymoon she experienced chronic heartburn. The doctor diagnosed her as being five-and-a-half months pregnant.

“I had no idea. I had not a thing that told me I was pregnant,” she said.

Donnelly said that she was taking birth control pills the entire time, so the first concern was that the hormones might have affected the baby and that she didn’t have any prenatal care. Also, the time period in order to have an amniocentesis to determine if the fetus had spina bifida was coming close. Her genetic counselor told her she only had a 3 percent chance of having a baby born with the disability, and Donnelly went on to carry her daughter to term and deliver her through natural childbirth.

She became pregnant with her son about three years later, although she was using an alternate birth control method.

“[With] him, I knew [I was pregnant]. I had gestational diabetes, heart problems, asthma,” she said.

The doctors again considered her a high-risk pregnancy, especially since after her first delivery she experienced uterine prolapse, and had the first repair surgery done in the United States.

“They were pretty sure I’d have a second uterine prolapse and I would have to have a hysterectomy,” she said.

Instead, Donnelly once again defied the odds and delivered a healthy baby boy. Later on, she was found to have the precursor to cervical cancer, so she underwent surgery to remove the cervix and repair a prolapse she suffered later on.

After she and her first husband divorced, she was forced to try the dating scene again.

“Technology improved and I went from the CB radio to the computer,” she said.

Four years ago she met Vinny, her husband of two years, who was a member of her computer group.

“We met at a party. ... [My friend and I] were waiting in the parking lot for everyone to come’” she said. “He drove up on his Harley, drove up to my side of the van and said, ‘Hi, I’m Vinny.’ I said, ‘Hiiiiiiii.’ ”

Her friend constantly told her to stop staring, but she was infatuated. She and Vinny both went onto a porch to smoke, and made small talk. He later helped her get into the van, literally picking her up out of the wheelchair.

“It turned out he had the same reaction to me — he thought I was out of his league,” she said.

He e-mailed her the next day, and they went to dinner. A little glitch in the relationship, however, was the fact that Vinny rode on a motorcycle.

“I asked if he had another mode of transportation,” she said.

Although she constantly refused to ride his motorcycle, he eventually convinced her to try one time. He added a Velcro strap seatbelt and cords for her ankles. After the ride she said to him, “I went, it was fun. I’m ready to get off now.”

Yet she continued to ride with Vinny, eventually enjoying herself.

Vinny, who served two years in the Air Force during the Vietnam War stationed in New Mexico repairing airplanes, designed and built a wheelchair carrier for his bike so that Donnelly could accompany him on longer trips. They later decided to form Disabled Riders of America, a nonprofit organization to aid bikers with disabilities. In one year since its founding, the organization has received membership from 78 people from across the country.

“Everyone who found the Web site is so grateful. They’ve never had a central place to talk to people,” Donnelly said. “I think it’s successful in it’s fledging stage. We’re looking into fund raising.”

Besides motorcycle riding, Donnelly said most people would be surprised to know that she enjoys swimming, tried jet skiing once and is a roller-coaster aficionado.

“Vinny has opened up the whole world,” she said. “To Vinny, there is no such word as ‘can’t.’ ”

Her future goals are to go parasailing, go cross country to Las Vegas and California to ride their roller coasters, and to tour Europe.

“I’ve always just lived by ‘never give up.’ That’s pretty much it. ... My main piece of advice is, if there’s anything you want to do, go for it and exhaust all possibilities before saying it is impossible because virtually nothing is impossible.”

She credits her family with keeping her strong.

“For the most part, my kids have been great. ... I don’t even think they see [the wheelchair], I’m just Mom. When they were younger they used to fight over who was going to push me,” she said.

“I think because I was raised to be as independent as possible, raised that nothing should stand in my way ... being with Vinny really reinforces that. That’s not to say I never get discouraged, but at times like that, that’s where I draw from. I can lay down and roll over, or get up and push my way,” she said.

To learn more about spina bifida, visit the NINDS Web site or the Spina Bifida Association Web site at www.sbaa.org. To donate an electric wheelchair, volunteer or receive information about receiving a chair, call Hardy at Chapter 3 in Warren County at (908) 689-8910.