By Laura Thornton
At 23, Alexis Byers is already making a difference in the world. She’s the founder and director of Knock Back, Let Fly, an aspiring nonprofit organization that prepares activity boxes for kids experiencing hospitalization. She also works for National Trafficking Sheltered Alliance, a nonprofit anti-trafficking organization, and is getting her master’s degree in homeland security and emergency preparedness.
But if you’d told her a year ago that she’d be doing all this today, “I never would have believed you,” she says.
When Alexis was 17, she developed complex regional pain syndrome (CRPS). For five years, she experienced constant, excruciating pain on a daily basis. Her arms and hands were particularly affected. She couldn’t even write her name.
Alexis learned about Kennedy Krieger Institute’s services for chronic pain from a fellow member of a CRPS support group. In January of 2021, she started a two-month course of treatment at the Institute’s Specialized Transition Program (STP), a neurorehabilitation day hospital, where she learned ways to reduce and manage the pain. Daily physical and occupational therapies soon had her using her arms and hands again.
It wasn’t easy. “I had to develop a specific mindset,” she explains. “I had to work with the pain, instead of against it. But my care team believed in me on a level that I have never seen before. They taught me that it doesn’t matter how many things need to be done in a day—you can do them all, as long as you give yourself some time, and some grace.”
Alexis continues to use that approach, not just for her ongoing physical and occupational therapies to help keep her pain at a manageable level, but also in balancing the many demands of a job, graduate school and managing her organization.
She started Knock Back, Let Fly when she was 17 and going from one doctor to another in search of an effective treatment for CRPS. “I was in and out of hospitals frequently, but would see young kids staying in the hospital who didn’t get to go home. I wanted to do something to say to them, ‘I see you, and I notice what you’re going through.’”
Alexis started raising funds to buy things like coloring books, crayons, games and small toys for the kids, then brought community members together to assemble the items into boxes, which she then delivered to pediatric hospitals. Doing something for others, she found, gave her life purpose, and motivated her to hold out hope that she’d one day get better. After her treatment at STP, and again in August of 2022, she donated dozens of boxes to the program, as well as to Kennedy Krieger’s inpatient hospital.
I just want to continue helping people.” – Alexis Byers
Alexis still has occasional appointments at Kennedy Krieger. “They never make me feel badly about my condition, or that I’m supposed to have dealt with it already,” she says. “It just feels really good to have people constantly rooting for you. It’s hard to put into words how much Kennedy Krieger helped me. They changed my life.”
And now, Alexis is helping others, through her work, studies and organization, and her outreach to others with CRPS. “I’ve talked with people across the nation with CRPS or a pain condition of some sort. Having this condition isn’t easy, but having someone there who knows what you’re going through helps.”
With Alexis’ pain now at a manageable level, she’s dreaming bigger than she’s dared to dream in a long time. She just moved into her first apartment—in Baltimore, a city she associates with healing and getting back her independence. She’s looking forward to traveling and doing activities she hasn’t done in years. And yet, her primary focus remains on others. “I just want to continue helping people.”