In My Own Words

by Paul Siegel • June 19, 2018
Paul's mission: to raise awareness about a rare neurological disorder affecting him and many others around the world.
Paul Siegel.

I was barely a day old when I was diagnosed with Sturge-Weber syndrome (SWS), a neurological disorder, 36 years ago. Seventy-five percent of my body was—and still is—covered with port-wine birthmarks. I went on to develop seizures, migraines, glaucoma and many other health issues. No one knew what caused SWS back then.

Growing up, making friends was a challenge. It’s still hard for me to stay positive and not be bothered by all the stares I get—they make me feel like I’m being judged. I’ve often thought to myself: This needs to change—not just for me, but for everyone with SWS. People are confused when they see me. We need to increase awareness about SWS, and we need better treatments.

by Erin Richmond • November 28, 2017
A teacher and former fellow of Kennedy Krieger's Center for Innovation and Leadership in Special Education gives back to the very community that supported her as a child with a disability.
Teacher and former Kennedy Krieger fellow Erin Richmond sits at a desk, surrounded by books and teaching materials.

Growing up, I loved school. I was a curious, bright and steadfast learner.

As a child with a disability, I learned first-hand the value of special education. The supportive services I received at school helped me achieve far more than doctors initially thought possible. I graduated in the top 5 percent of my class, and went to college and graduate school.

I have Treacher Collins syndrome, a rare genetic condition that affects the development of the bones and tissues in my face. At 4 months old, I went into full respiratory and cardiac arrest at home. Doctors told my parents I might not live through the night and feared severe neurological damage if I survived. Several days later, I made my first trip to the operating room for a tracheostomy. Since then, I’ve had more than 50 surgeries.

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

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.


Bradley L. Schlaggar, M.D., Ph.D., Named President and CEO of Kennedy Krieger Institute

We’re thrilled to welcome Bradley L. Schlaggar, M.D., Ph.D., to the Kennedy Krieger family as our next President and CEO.

Learn more.


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