Inspiring Stories

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.

How a team of specialists—and a loving family—helped a little girl heal in body and spirit.

Ask 7-year-old Kat what she wants to do when she grows up, and she’ll tell you, as if on cue, “To help hurting children and make them happy!”

Kat—short for Katarina—knows a lot about being happy. She loves playing with her friends, dancing, gymnastics, Legos, animals, the beach, and her close-knit family, which includes three doting older sisters.

But Kat also knows about hurting. Just before Christmas 2015—only a day before she turned 6—she was attacked by two large dogs. The unprovoked attack ripped all five nerves that extend down the length of her left arm from their roots, paralyzing the arm. It also injured her spinal cord, fractured her skull and left her with wounds all over her body.

AFM took away Sebastian’s ability to walk, but he’s fighting back—superhero-style—one step at a time.

AFM took away Sebastian’s ability to walk, but he’s fighting back—superhero-style—one step at a time.

Ask Sebastian what he wants to be when he grows up, and he’ll tell you: “A warrior!”

It’s a fitting aspiration for a boy named after the patron saint of soldiers. But Sebastian is already a warrior. He fights every day to walk, gain strength, redevelop motor skills, and get back to the business of being a 6-year-old after developing acute flaccid myelitis (also known as AFM) last August.

Finding resilience and hope at the Center for Child and Family Traumatic Stress.

In many ways, Zyaira is like most 9-year-old girls. She loves to ride her bike, roller-skate and do her own hair. She likes to help her mom cook—grilled cheese is a favorite. But when she came to Kennedy Krieger Institute's Center for Child and Family Traumatic Stress in 2013, she was a very different child.

After witnessing her father have a massive heart attack, she and her mother, Charisse, moved to Baltimore from rural Virginia. Soon, Zyaira’s concerns over her father’s health were compounded by separation anxiety and difficulty adjusting to a city school. Shy by nature, Zyaira would be reserved and quiet, and then have uncontrollable temper tantrums. She was afraid to sleep alone at night, and she talked in a baby voice when stressed.
 

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.

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