In My Own Words

by Amy Dykes • July 28, 2017
Kennedy Krieger once helped Amy Dykes recover from a brain injury. Now, she teaches the lessons she learned as a patient to her students at the Institute's Fairmount Campus.

When I was 18 and in my first semester of college, surgeons removed a large tumor from my brainstem and cerebellum.

The surgery was successful, but side effects were similar to those of a traumatic brain injury. I developed cerebellar cognitive affective syndrome, which disturbed my executive functioning, spatial cognition and language skills. I developed sympathetic storms, in which—for no apparent reason—I’d be thrown into a state of extreme agitation and hypertension. I lost most of my reflexes and developed hallucinations and insomnia.

My doctors transferred me to Kennedy Krieger Institute, where days became weeks, and weeks became months.

My neurological recovery was very slow and my future was uncertain. But my doctors, nurses and therapists were incredible. They continued to tolerate my unfiltered verbal outbursts and echolalia.

by Robby Beckman • December 05, 2016
After paralysis, Robbie discovers adaptive sports and sails to Cuba on an adventure of a lifetime.

When I was 19, I dove off a dock. My three buddies went to the left, but I dove to the right. I woke up 13 days later with a spinal cord injury. The doctor delivered the news of paralysis, along with a list of things he said I’d never do again.

At first I didn’t believe it, but then I viewed the future as a challenge. For nearly three years, I focused on gaining as much independence as possible. While my friends were in college, I spent my days in rehab.

It was a mental struggle, but the therapists at Kennedy Krieger pushed me further than I knew I could go. After the injury my physical abilities were very limited. If I hadn’t been dedicated to rehab, I couldn’t live the life I have today.

Mike Fritschner • June 28, 2016
An unimaginable surfing injury left Mike Fritschner paralyzed at age 15. He thought he had lost everything, until he gained back even more.

I was surfing with my dad on a family vacation in Hawaii in 2006. I stood up on a wave and felt a small pop in my back, which began to hurt. I paddled in and tried to stretch my back, but it just kept hurting more. I felt my legs getting really tired. I walked a few feet and collapsed. That was the last time I was really able to feel my legs. I was 15.

I experienced a rare injury called surfer’s myelopathy. While I was surfing and turning to look back at the wave, my back hyperextended, which cut the flow of blood to my spine, causing some nerves to die.

My plan had been to become a professional quarterback. I told my dad that without my athletic ability, I wasn’t anything. He said that I was much more than an athlete and that we would get through this together. At that moment, I knew I would never use being in a wheelchair as an excuse not to do something or let it define who I am.

Kylie Himmelberger • December 08, 2015
Ready to Launch
Kylie

Guillain-Barré syndrome (GBS) took away my independence. The disorder left me partially paralyzed and robbed me of my ability to walk, talk, and even eat. But thanks to Kennedy Krieger’s International Center for Spinal Cord Injury, I got my independence—and my lifelong dreams—back.

In January 2014, I became an inpatient at Kennedy Krieger. From the start, a team of supportive doctors, nurses, and therapists helped me come up with treatment goals. I was scared at first.

Francisco Oller • September 08, 2015
Life Lessons
Francisco Oller

In life, we face many challenges that we have no control over.

I was born with a rare genetic disease, Pelizaeus-Merzbacher (PMD), that affects my motor skills. In my youth, I was bullied and rejected in school because of my disability.

Marc Russo • December 02, 2014
Have Dreams, Discipline & Fun
Marc Russo

Imagine going through your day and only hearing part of what your friends and teachers say. How would you feel if you missed the punch line to the joke? Or imagine someone calling your name in a crowded cafeteria but not knowing where that sound came from.

Two to three percent of the population doesn’t have to imagine these situations, because they live them. They have auditory processing disorder (APD), a disorder that occurs when the ears and brain don’t fully coordinate. Someone with APD has trouble understanding directions, often cannot hear himself, and may have speech difficulties. He might smile and nod but miss out on the joke, or he might not respond when you call his name.

Makaile Stanley • August 01, 2014
Defying the Odds
Makaile Stanley

I remember the moment I knew I would be the first person in my family to attend college. When I was 16, a doctor recommended that I apply to a technical school instead of a four-year college because of my Asperger’s syndrome. I was crushed and broke down in tears. I took red permanent marker and made a giant “X” on his report and threw it away. I decided then and there that I wanted to go to college. I wanted to do better.

Marshall Garber • November 13, 2013
Colorado Dreaming
Marshall Garber

A few years ago, I developed a mass on my spinal cord that left me paralyzed. My family sought out the best place to help me, which was Kennedy Krieger. Going into treatment, I didn’t have any intention of forming a family there, but in a way, I did. Multiple people at Kennedy Krieger had an impact on me, but Dr. Becker has been one of the most influential people in my recovery.

Bob Nobles III • August 02, 2013
Great Expectations
Bob Nobles in his Young Marines uniform

I started attending Kennedy Krieger in fifth grade. I’m now a junior in high school. It’s been a really good experience. I don’t think I’d be where I am now if it hadn’t been for Kennedy Krieger. Before I came here, I was below grade level on everything, I had low self-esteem, and my behavior was an issue.

John Manison • November 02, 2012
“You can do whatever you want as long as you put your mind to it.”

In November 2009 I felt a sudden, severe pain in my legs. I was diagnosed with a disease called transverse myelitis, which attacked my spinal cord and paralyzed me from the waist down. I had some feeling in my legs, like pins and needles, but I had no movement whatsoever. I started coming to Kennedy Krieger for intensive therapy four to five hours a day. Thanks to my amazing therapists and because I was religious about continuing therapy at home, I made a lot of progress.

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