Intrepid, Joyful Lewis Takes SCI Rehabilitation by Storm

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Lewis is a magnificent whirlwind of a teenager. Living his sports-and-adventure-filled life in Kenya meant the teen was swept up in the national craze for motocross. “I love motocross because I love going fast,” he said.

The country’s wide-open spaces are ideal for a sport that involves racing laps around a track or circuit with tight curves and jumps and contours. It’s not for the faint of heart, but then, Lewis is all heart.

On a January day, Lewis was riding a course he knew well, but he missed a turn, catapulting 20 feet into the air with his motorcycle and landing on his back. He couldn’t feel his legs. “It was the scariest thing that has ever happened in my life,” he said.

Lewis was rushed to a hospital in Nairobi, where a neurosurgeon told his mom, Cynthia, that he had sustained a complete spinal cord injury (SCI), with vertebral fractures at T11 and T12, in the lower back. It was likely that Lewis would be paralyzed below the level of the injury.

Starting at midnight, Lewis underwent a six-hour surgery during which doctors inserted titanium rods to decompress the spine. A few days later, he was flown to South Africa for the next level of care. “After the first week, it was obvious that South Africa did not have the specialized care Lewis needed for that level of injury,” said Cynthia, who was born in America and moved to Kenya more than a decade ago. “I knew that, for Lewis to have the best outcome, he needed to come to the States.”

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Despite the great distance, they decided on Shirley Ryan AbilityLab in Chicago. “I began researching and quickly found Shirley Ryan AbilityLab … but not as quickly as Lewis did,” Cynthia said. “He found a Shirley Ryan AbilityLab video of another patient with an SCI whose progress in recovery inspired him.”

They also discovered a connection with a former Shirley Ryan AbilityLab patient living with a sports-related spinal cord injury. “He was invaluable as an advocate, a driving force in helping us decide where Lewis would get the best chance at the best outcome, and he has been Lewis’ mentor ever since,” said Cynthia.

They were also excited about Shirley Ryan AbilityLab’s integration of research and cutting-edge technology with physical rehabilitation. “I wanted Lewis to be part of a community with that kind of excitement and that atmosphere of possibility,” she said.

Working with a case manager from Shirley Ryan AbilityLab’s Global Patient Services, they arranged for the 8-hour flight to Dubai, UAE, and then the 15-hour flight from Dubai to Chicago.

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Six weeks after the accident — and 23 hours and 8,000 miles later — Lewis and Cynthia arrived at Shirley Ryan AbilityLab. “Not many people in Africa get to come that far, to America, and get rehabilitation at Shirley Ryan AbilityLab,” he said. “If I got that opportunity, I needed to give it my best.”

By the second week, he was doing three hours of therapy a day, including physical, occupational and speech-language therapies. “He was game for everything we suggested and picked up on new activities quickly,” said Suzanna, his primary PT. He also attended a tutoring session every weekend morning to keep up his academics.

Additionally, Lewis was seen almost daily by a recreation therapist, who introduced him to adaptive sports and adaptive mountain biking (taking him out to ride almost every Friday). Shirley Ryan AbilityLab's therapeutic recreation team also assisted Lewis in ordering his own mountain bike, as well as an all-terrain wheelchair.

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Within six months, Lewis had progressed through Shirley Ryan AbilityLab’s entire spectrum of care — from inpatient, DayRehab and participating in research to feeding his love of sports (and life) through enthusiastic participation in the adaptive sports program.

As an inpatient, Lewis worked on bed transfers, upper-body and core strength and activities of daily living. He also worked with various pieces of high-tech equipment, including a Lokomat, an FES bike, C-Braces and an exoskeleton. “He was especially excited about wearing custom knee-ankle-foot orthoses because he was able to get vertical,” said Cynthia.

After eleven weeks as an inpatient, he graduated to DayRehab, where he continued making progress during full days of PT and OT. “One of the best parts of DayRehab was getting to be outside more,” said Lewis. He said he enjoyed refining his manual wheelchair skills outside in the real world that presented all sorts of surfaces and obstacles. “They told me I had gotten too good at popping wheelies,” he said with a grin.

After DayRehab, Lewis participated in three different research protocols in the lab of Dr. Monica Perez, PT, PhD, who is an internationally recognized leader in spinal cord injury (SCI) research, as well as Shirley Ryan AbilityLab’s Scientific Chair, Arms + Hands Lab. Still ongoing, this study’s primary goals are to increase muscle activation through exercise, overground walking and high-intensity stimulation.

All three protocols in which Lewis participated use a technique called spike-timing-dependent plasticity (STDP). Participation in the first protocol ran for 40 days, and sessions included precisely timed nerve stimulation, followed by walking on a treadmill with the assistance of an overhead body-weight-support harness.

The second protocol included 40 sessions of STDP in combination with hypoxia (a safe reduction in oxygen level), and the third included another 40 sessions of STDP combined with hypoxia and 4AP, which is a new drug shown to be effective in treating some SCI symptoms. In total, Lewis completed 120 sessions of STDP, 40 sessions of STDP and hypoxia, and 40 sessions of STDP, hypoxia and 4AP.

Lewis was enthusiastic about participation. “I did feel a change, a little sensation and the ability to flex some muscles in both legs,” he said. Dr. Perez and his mom were even more excited because of what these small changes meant for the future.

“Lewis’ progress was remarkable,” said Dr. Perez. “We tested him on numerous occasions, and his paralysis was very severe. We had never observed any voluntary muscle activation whatsoever. Then, after these repeated sessions of multisite neurostimulation, we saw a small level of voluntary contraction in some leg muscles. These were small, but voluntary. This moment was huge. To regain function, you need to regain voluntary control of your muscles.”

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Throughout his journey, he participated in adaptive sports. A life-long athlete, Lewis took to sports that he had done before, such as basketball and swimming, as well as sports he discovered. “It is so fun for me. Softball was new to me; so was archery,” he said. Lewis is hoping to join Kenya’s paralympic team and represent the country in archery.

Lewis is very proud of excelling in competitions. He participated in a weekly adaptive off-road cycling program. His group rode on various gravel and single-track trails throughout local forest preserves. The off-road group formed a partnership with CAMBr (Chicago Area Mountain Bikers) and participated in a series of countywide mountain bike races. “I took second place at one race and first place at the other,” he said.

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Six months after arriving, Lewis and his mom returned to Kenya where he enjoyed taking his dogs on forest walks in his GRIT bike, going on safari, and hanging out with friends and family. Then, after spending five months at home, Lewis returned to the United States to live independently while participating in more research.

“In Kenya, it’s much harder for people who use wheelchairs,” said Cynthia. “It’s harder to get around. Few curb cuts in the sidewalks, fewer working elevators and, regretfully, a cultural stigma to contend with.”

Lewis is back in Chicago and continues working in Dr. Perez’s lab. He is pursuing his GED and ultimately plans to apply to University of Illinois–Urbana Champaign. He looks forward to competing in wheelchair basketball, mountain biking and archery. He has also become a big fan of the Chicago Bulls and going to concerts at the United Center.

Additionally, Lewis is excited to be living in his first apartment — a building downtown which, coincidentally, looks out at Shirley Ryan AbilityLab.

“We keep remarking about what a journey it’s been, from being a patient to now overlooking other patients beginning their journeys,” said Cynthia. “We send positive energy daily to the families and individuals just starting out who may be frightened or stressed.”

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Lewis wants to help others who are on similar journeys. “I would love to show people who have spinal cord injuries that there are always possibilities. I want to be a leader, sharing my positivity — especially in Kenya.”

The magnificent baobab tree is an icon of the African continent. With bark and fruit offering more than 300 uses, the baobab is a symbol of life and positivity … as is young Kenyan, Lewis.