Feature Stories

by Christianna McCausland • July 28, 2017
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.
 

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.

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.

by Kristina Rolfes • December 05, 2016
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).

by Kristina Rolfes • December 05, 2016
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.

by Kristina Rolfes • December 05, 2016
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.

Kristina Rolfes • June 28, 2016
From Bangladesh to Baltimore, Sariyya learns to 'speak' through eye gaze system.
Sariyya smiling

On the outskirts of Dhaka, the capital of Bangladesh, you can hear the laughter and voices of schoolchildren bubbling through the open windows. One child, 7-year-old Sariyya, is quiet. Though no sound leaves her lips, she is communicating with her teacher. In front of her, on the tray of her wheelchair, lies a book of pictures. Sariyya’s gaze shifts from her teacher to the book before her, and back to her teacher. The teacher looks at the image of the cup in the book, and asks, “Sariyya, are you thirsty?” Sariyya’s gaze moves to the word “yes.”

It is a simple, yet ingenious eye-gaze communication system designed specifically for Sariyya by a speech-language pathologist at Kennedy Krieger Institute.

Kristina Rolfes • June 28, 2016
Brain injury won't keep this budding actor from his Broadway dream.
Greg Kenney

Greg had been training for weeks for the 2015 Rock ‘N’ Roll Virginia Beach Half Marathon and seemed in perfect health. But when Greg was within a few hundred feet of the finish line, he went into cardiac arrest and collapsed.

Running a few paces ahead of him in the race was Adrianna Amarillo, a medical resident. When she heard someone call for medical help, she turned around, ran to Greg, and performed CPR until a medical team arrived to airlift him to the hospital. But because of the prolonged lack of oxygen to his brain, Greg sustained a severe brain injury.

Later that evening, Amarillo went to work and saw Greg in her ICU. Greg’s mother, Stephanie Watson, says that Amarillo had found an angel pendant on the road a few months earlier. After someone said “you must be his guardian angel,” she remembered the pendant and gave it to Greg.

Christianna McCausland • June 28, 2016
3-year-old Sanayah is thriving despite spinal cord and traumatic brain injuries.
Sanayah

No one needs to tell Eric Pineiro that life can change in an instant. That moment for him was June 20, 2015. He was driving his wife and 2-year-old daughter, Sanayah, home from the mall when a drunk driver swerved into their lane. The impact killed a passenger in the oncoming vehicle, and sent Sanayah’s mother, Nandraine, to Shock Trauma, and Sanayah and her father to the hospital. The crash left Sanayah with a severe spinal cord injury, brain hemorrhage, and concussion. Although her spine was intact, the swelling—and the damage to the nerves that followed—left her paralyzed from the chest down.

The weeks that followed were difficult. Eric, whose condition had stabilized, spent long, sleepless nights with his daughter hoping she would survive, while Nandraine struggled to recover from her own injuries and the anxiety of being separated from her daughter.

Kristina Rolfes • December 08, 2015
Christian's family searched for a diagnosis for years.  They finally found answers—and treatment—at Kennedy Krieger Institute. 
Christian

Multiple specialists spent eight years seeking a diagnosis for Christian Meese, ordering brain MRIs, muscle biopsies, blood tests, and sleep studies. When Christian and his family turned to the Neurology and Neurogenetics Program at Kennedy Krieger, experts found an answer through whole exome sequencing—a technique that analyzes thousands of genes all at once with a single test.

Knowing the cause of Christian’s developmental disability means doctors can offer targeted treatment for his individual needs. 

Pages

TAKE OUR READER SURVEY

Potential Reader SurveyTell us what we're doing well and how we can improve, so you can enjoy the best possible reading experience!

Click Here to Take the Survey Now >

SEARCH INSTITUTE NEWS