Finding Freedom with Prosthetics
Jan 01, 2018 Cedars-Sinai Staff
For Brett Botelho, sports are the best medicine.
As a child, it was baseball—playing it as often as possible and cheering on his favorite teams. These days, it's snowboarding, gracefully whooshing down snowy slopes, his board and body moving as one.
Botelho says he is grateful to be able to strap on a snowboard at all. A rare autoimmune disorder that causes his body to attack his nerves left him weak, and sometimes paralyzed for months at a time, in addition to requiring many surgeries on his legs, hips and ankles. His latest surgery has given him freedom from daily pain and to walk his beloved dog Avalanche and take to the slopes.
"I've never made a better decision. I wake up and I know I'm not in pain. It's no longer a question of 'How am I going to get through this day?' but 'What am I going to do with this day?'"
"I can press play on my life now," says Botelho, 29. "I've never made a better decision. I wake up and I know I'm not in pain. It's no longer a question of 'How am I going to get through this day?' but 'What am I going to do with this day?"
Botelho was diagnosed with chronic inflammatory demyelinating polyneuropathy, a neurodegenerative disease that causes the immune system to attack the nerves. He tried steroids and infusions to treat his symptoms. In his lifetime, he had two episodes of paralysis that lasted nine months and had 10 surgeries, including multiple surgeries on his left leg.
His illness and paralysis took a toll on his feet, causing the muscles to atrophy. His feet began to turn inward, making it difficut to walk. While surgery addressed his right foot, the left would get better for a few months, then begin to turn inward again.
He made an appointment with Timothy Charlton, MD, a Cedars-Sinai orthopaedic surgeon. Charlton presented him with several options.
"Again, they were going to be temporary fixes," said Botelho, who was tired of living with severely limited mobility and nearly constant pain. "I stopped him in the middle of his words and asked, 'What if I just take it off?'"
Charlton worked with Botelho to develop his treatment plan, and set the date for his surgery in December 2014.
"Brett's condition took away some of the basic functions that most people overlook," Charlton says. "Yet, Brett embraces life in ways that most of us should envy. Faced with choices that would be difficult for most to contemplate, he made them with focus, faith and courage."
Botelho had been considering amputation for two years. To be free of his daily pain and able to go back to the sports he loved, he had to be free of his constant foot and ankle problems.
"This would allow me the freedom that I had always longed for, and I could gain back the independence that I had just lost," he writes in his book, Standing My Own Ground, which details his struggles with chronic illness.
Charlton's support was crucial while Botelho recovered from the surgery and prepared for his prosthetic.
Before his surgery and prosthetic, Botelho relied on braces that he strapped on to his leg, cushioned with six neoprene pads. He was only able to walk a block or so. Sometimes he leaned on an office chair, wheeling it alongside him when he took his dog Avalanche on walks.
Botelho started creating a collage of photos of himself snowboarding, taken during trips all over the country, as part of his surgery preparations. He hung these photos over his bed, so he could visualize what his first runs back on the mountain might be like.
"Dr. Charlton was always there to challenge me to do something new each time I left his office," Botelho says. "It didn't matter if it was small or big—he just wanted me to get out, get back to normal and do anything to stay busy."
He returned to the slopes within weeks of wearing his new prosthetic limb. Every run played out the way he imagined it would, he says. Back in the lift chair, breathing fresh mountain air, he snowboarded run after run—getting used to the feeling of his new leg and how to maneuver on his snowboard.
During his recovery, he was inspired to reach out to Adaptive Action Sports, a Colorado-based organization that creates opportunities for people with physical disabilities to get involved in skateboarding, snowboarding and other action sports.
His dream is to snowboard in the Paralympic Games in 2022.
"Never let fear decide your fate," he says. "If you do, you will never get to see your full potential."
Brett is a grateful patient and supporter of the Campaign for Cedars-Sinai. Learn more about the Campaign.
Are you a grateful patient, family member, volunteer, or loyal supporter? We want to hear from you. Your story can inspire others who may be facing similar challenges—and most importantly, provide hope. Share your story of gratitude or see how others are sharing #CedarsGratitude.