Valley News // February 17, 2018

Her only direction is forward

By Jim Kenyon

When I met up with Sierra O’Leary at Rivendell Academy on Thursday afternoon, splotches of blue paint covered her hands. In preparation for the school’s annual winter carnival, she’d been working on a senior class poster — a project with which she seemed to be having great fun.

Sierra, 17, is also working on a much more serious school project. It has to do with spinal cord injuries — something she knows about personally.

In a skiing accident at Dartmouth Skiway last Feb. 23, Sierra suffered a fall on a steep slope that caused a burst fracture of the first lumbar vertebra in her lower back. Nearly a year later, she remains paralyzed from the hips down.

After undergoing a 12-hour surgery at Dartmouth-Hitchcock Medical Center, Sierra was transferred to Spaulding Rehabilitation Hospital in Boston. Doctors there speculated that spinal shock — inflammation around the injured area — was causing her paralysis.

By the end of her nine-week stay at Spaulding, her condition hadn’t changed, but she was able to get back to her parents — Robert O’Leary and Susan Gyorky — and siblings at their home in Fairlee.

When I wrote about Sierra in June, she and her dad were spending a good chunk of each week in the Boston area for her outpatient therapy.

They still are.

On Tuesday mornings, Sierra’s dad drives her 2½ hours to a gym in Canton, Mass., designed for people who have suffered severe spinal cord injuries. A nonprofit organization called Journey Forward runs it.

For two hours, Sierra works on improving her strength and balance. Electrodes are attached to her legs and back to stimulate her muscles and nerves. With 5-pound weights strapped to her ankles, she crawls across the floor. Using her hip flexor muscles, she rides a stationary bike.

“It’s hard to see the progress because it’s so slow. I have to be patient,” she told me. “But I’m a lot stronger than I was.”

After she finishes up at Journey Forward, Sierra and her dad stay overnight at her grandmother’s condo in Quincy, Mass. On Wednesdays, Sierra has outpatient therapy at Spaulding, where she’s learning to walk with leg braces.

On Thursdays, after a second night at her grandmother’s condo, she returns to Journey Forward’s gym for another exercise session. It can sometimes take years following a traumatic injury for the inflammation around the spinal column to diminish, doctors have told her.

Sabrina Cautilli, a neuro-exercise specialist, has worked with Sierra since she started at Journey Forward about nine months ago.

“She was very shy at first, and there was a fear factor about trying things,” Cautilli told me over the phone. “She’s really come out of her shell. She’s pushed herself through so many boundaries. There’s been a ton of progress.”

On Thursday afternoons, father and daughter make the long drive home. “It’s kind of rough on my dad,” she said. “He does all the driving. I just nap.”

Robert O’Leary is a stay-at-home dad who is also an actor, performing in TV commercials and local theater productions. His wife is a registered nurse in the cardiac catheterization lab at DHMC. Susan Gyorky spends a fair amount of time talking with experts on spinal cord injuries and researching treatments.

She recently discovered a Texas-based nonprofit called Chive Charities that covers medical expenses for people who are trying to regain their independence.

After hearing Sierra’s story, the organization awarded her $20,000. The money could have been used to make her family’s 19th-century two-story Victorian house more wheelchair friendly. Sierra had something else in mind.

Her Journey Forward sessions cost $100 an hour — and are not covered by insurance. The $20,000 grant is paying for another year of physical therapy.

Gyorky’s research also turned up a clinical trial at the University of Louisville that is exploring the use of “epidural stimulation” to help people with spinal cord injuries recover voluntary movements and the ability to stand. Gyorky has added her daughter to a lengthy list of candidates for the study, which has been approved by the U.S. Food and Drug Administration.

Sierra hasn’t lost hope that she might some day walk again and she’s willing to do whatever it takes — including moving to Louisville, Ky. — to improve her chances. But she’s also determined not to put her life on hold waiting for it to happen.

She’s starting to think about college — even if it means going in a wheelchair.

She’s come a long way in a relatively short time.

When she returned home from Spaulding, “she didn’t want to go out. She didn’t want to see anyone,” her mother said. “Now she’s back living her life.”

On weekends, Sierra gets together with friends to watch The Bachelor. Last week, she took a break from her physical therapy in Boston to be part of Rivendell’s winter carnival festivities.

“I’m lucky to have family and friends who really care about me,” she said.

She still does much of her studying online, including her senior project that’s intended to educate people about spinal cord injuries. “It’s new to me, too,” she said. “But I’m still the same person. Except I have wheels instead of legs.”

At home, her bedroom is on the second floor. To get there, she sits backward on the bottom stair, pulling her 110-pound frame up one stair at a time. “I want to be as independent as I can, which is hard because I’ve been stripped of a lot of my independence.”

As a teenager, Sierra is learning that her life may never be the same. But it’s far from over. “There is really no choice,” she said. “I’m not going to give up.”