Nicole Luongo’s lifelong dream was simple: learn to ride a bike.
Because she was born with cerebral palsy, that dream remained out of reach for decades.
That is, until she turned 39, and learned about a controversial, and often scrutinized, form of life-changing surgery for cerebral palsy. The procedure involves cutting the sensory nerve fibers that enter the spinal cord.
Nicole had spent decades struggling simply to climb stairs, step up onto curbs, and just plain walk, so the potential risks of selective dorsal rhizotomy —which includes spinal fluid leakage, paralysis of the legs and bladder, impotence, and sensory loss — seemed worth the gamble.
During a meeting with Dr. T.S. Park, a neurosurgeon at St. Louis Children’s Hospital, Nicole learned that if she had the surgery she would indeed be able to check off the number one goal on her bucket list: ride a two-wheel bike.
Since SDR is considered elective, she didn’t know if Medicare would cover any of the estimated $50,000 for the surgery and physical therapy. Friends, family, and a bunch of strangers on the Internet donated $4,500 to her Facebook campaign. The surgery was a success.
Now an advocate, Nicole often speaks to others with cerebral palsy about the benefits of SDR, and hopes to spread greater awareness of the procedure—and eliminate some of the stigma.
“For parents of a child who is unable to walk before SDR, and can after SDR, that completely changes their lives. For others, SDR helps eliminate pain. That also changes lives,” she said. “My life would have been very different had my parents known about SDR when I was a child. I share my story so more kids can get new legs and have experiences that may have not been possible for them without SDR.”
Of the 3,000 procedures performed by St. Louis Children’s Hospital, only four had spinal fluid leakage.
Now, Nicole is rock climbing, jogging, ballroom dancing, and, yes, riding a two-wheeler.
“I would have never found out about SDR if I hadn’t literally stumbled on the information,” she said. “I don’t want that to happen to anyone else.”
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