Inspiring Stories

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.

Born severely premature, Morgan, now 12, is thriving in school and in life, thanks in part to developmental specialists at Kennedy Krieger.

For Beth Vester and her daughter Morgan, 12, the NICU Follow-up Clinic at Kennedy Krieger Institute has been a steady source of guidance and support over the years. Morgan was born 14 weeks early, weighing just 1 lb.,10 oz., and spent six weeks in the NICU (neonatal intensive care unit) of a nearby hospital. Morgan’s pediatrician recommended follow-up care at Kennedy Krieger.

Unable to eat on their own for their first three years of life, these quadruplets overcame their feeding disorders with the help of specialists at the Instiute.
The quadruplets

It seems like an obvious fact of life: if a child is hungry enough, he will eat. Yet for some children with a history of prematurity or developmental disorders, eating is a skill that does not develop automatically.

When quadruplets Timmy, Edda, Lily, and Wyatt were born prematurely at 24 weeks’ gestation, their parents, Anne and Rob, knew their babies would face continuing medical complications. But they didn’t anticipate how much of a struggle the simple act of eating would be.

Scientists at Kennedy Krieger search for the key to curing Ellie, while keeping her symptoms at bay.
Ellie's Cure 1A

Ellie McGinn is an adorably sweet and charming third-grader from Arlington, Va., who has a progressive neurological disease known as LBSL. Although there is currently no cure or long-term treatment, researchers at Kennedy Krieger are working with her family to find the key to curing Ellie, while keeping her symptoms at bay.

When Ellie was a toddler, she began falling down and suffering from pain and fatigue. Her parents, Michael and Beth McGinn, took her to multiple specialists to find out what was wrong. Neurologists were perplexed—none had seen a case like Ellie’s. Over the next six months, Ellie’s ability to walk deteriorated. When a doctor finally diagnosed her, the news was grim. Ellie had a rare, neurodegenerative disorder known as LBSL (short for leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation).

Children with complex disorders and injuries need multi-faceted care

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