Inspiring Stories

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.

At Kennedy Krieger, a dedicated team coordinates care for patients, from pre-admission through discharge.
Kristine Mauldin and patient Lydia

After carefully preparing for a patient with complex medical needs to begin treatment at Kennedy Krieger Institute—gathering referrals and insurance approvals, reviewing medical records and assembling an interdisciplinary care team—nurse clinical care manager Angela Huff can’t wait to meet the patient when he or she arrives at Kennedy Krieger.

Together, doctors and family members are helping Tashamere live a life full of laughter, good grades, dancing and excitement for the future.
Kennedy Krieger patient Tashamere.

Meeting Tashamere, you’d never guess she’s been admitted to the hospital more than two dozen times. At 13, she’s a lively, vivacious teenager who loves gymnastics and modern dance and has the biggest smile.

But every year or two, she gets an MRI scan done of her brain, and once a month, she misses half a day of school to receive a vital blood transfusion. Her mom, Inetta, takes her to The Johns Hopkins Hospital, where she’s transfused with about two to three units of blood.

Tashamere has sickle cell disease, an inherited blood disorder that, untreated, can cause crises of intense pain and lead to stroke. She also has attention deficit hyperactivity disorder (ADHD), which can frequently co-occur with sickle cell disease, explains Dr. Eboni Lance, Tashamere’s neurologist and medical director of Kennedy Krieger Institute’s interdisciplinary Sickle Cell Neurodevelopmental Clinic.

Julia and her family travel all the way from the west coast of Canada so Julia can receive therapy at Kennedy Krieger.
Julia participates in robotic-assisted gait rehabilitation using the Institute's G-EO System.

With the strength of a Paralympian, Julia, 4, wheels herself into the therapy gym at Kennedy Krieger Institute. Her smile is contagious; her sense of humor, refreshingly quirky. Her spirit is indefatigable. Her strong arms take her wherever she wants to go in her pint-sized wheelchair, which is perfect for quick maneuvering.

Kennedy Krieger's interdisciplinary Pain Rehabilitation Program helps kids and teens get their lives back without narcotics.
Dr. Suzanne Rybczynski, medical director of Kennedy Krieger’s Rehabilitation Unit.

Life isn’t easy for kids with chronic, debilitating pain. Without treatment, they’re often forced to sit life out on the sidelines, watching other kids have all the fun. Some kids experience such unbearable pain that they’re unable to walk without assistance or even go to school.

But Kennedy Krieger Institute offers these kids and their families hope. At the Institute’s Pain Rehabilitation Program, clinicians from a variety of fields come together to help kids overcome their pain and get as much normalcy back into their lives as possible.

“Our goal is to help our patients learn to conquer their pain, and not be controlled by it—to help them live their lives again,” says Dr. Suzanne Rybczynski, medical director of the Institute’s inpatient services.

A drug meant to treat the debilitating seizures of Sturge-Weber syndrome has performed well in a clinical trial at Kennedy Krieger.
A medicine dropper drips liquid into a medicine bottle.

The seizures that are a constant reminder of the most severe effects of Sturge-Weber syndrome (SWS) often come on without warning. In their wake, they can leave children without mobility or language, depending on the degree of resulting brain injury or paralysis.

While some children find relief with anti-convulsant medications, many cannot tolerate the sedating effect of the medications or suffer from uncontrolled, severe seizures. Notably, SWS differs from other causes of epilepsy in that decreased blood flow to the brain can result in stroke, making seizure control an important priority.

Families like the Fanecas know this reality all too well. Not once, but four times, a seizure stole their daughter Anabelle’s abilities. Collectively, Anabelle has spent nearly 32 months of her childhood in rehabilitation, regaining the ability to talk, walk, read, remember math facts, ride a bike—and even tell a joke.

Karam and his parents moved almost halfway around the world so he could receive medical care at Kennedy Krieger.
At Kennedy Krieger’s outpatient center, physical therapist Brittany Hornby helps Karam walk with the aid of a walker.

Karam loves school, swimming and his bright green iPad.

It’s a captivating device for the 6-year-old, who understands English and Arabic but can only speak a few words of each. He uses his iPad to watch educational cartoons and listen to songs like “Old MacDonald Had a Farm.”

Karam’s parents, Dana and Ousama, use the iPad to motivate their son to do his therapy. One day last August, as Karam, gripping the handles of a small walker, slowly made his way across a therapy gym at Kennedy Krieger Institute, his dad sat on a rolling stool a few feet away, holding up Karam’s treasured possession and scooting backward as Karam got ever closer to the target.

After spinal surgery followed by a year of intense physical therapy, Nathaniel is walking better than ever.
Nathaniel walks with his mom, Jill, in Kennedy Krieger’s therapeutic garden.

This past summer, 8-year-old Nathaniel went to the beach. Running along the surf, kicking up sand and splashing in the water, Nathaniel would have seemed,
to a passing stranger, like any other kid having fun.

But it wasn’t an ordinary beach trip. For the first time, Nathaniel was playing in the water without having to be extra careful not to fall down.

Nathaniel has cerebral palsy. The condition affects his legs and feet, making them stiff. Up until a special surgery he had a little more than a year ago, he would occasionally have difficulty straightening out his legs; his ankles, especially the left one, didn’t always bend. Without leg braces, he’d walk on tip-toe—a little on his right, more so on his left, with his left foot often turned in. He couldn’t run as fast as his friends.

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.

A Kennedy Krieger clinic helps deaf and hard-of-hearing children get the treatments and services they need to communicate and let their personalities shine.

Mustafa’s parents had always known their son was smart. But because of his limited access to language early in his life, they had a hard time getting others to believe it.

At age 3, Mustafa’s doctor in Yemen, where he was born, determined that Mustafa was deaf. Doctors fitted him with hearing aids, but the window for language acquisition—during which he might pick up Arabic, his family’s native language—was quickly closing.

A few years later, his family moved to the Washington, D.C., area. Their new public school system evaluated Mustafa, determined that he was both deaf and intellectually disabled, and placed him in a program with students with similar diagnoses.


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