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.
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.
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).
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.
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.
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.
Four-year-old Anthony Olvera was born with a rare genetic disorder called Warburg micro syndrome. Characterized by cognitive, visual, and physical impairment, as well as cerebral palsy, Anthony’s condition meant that his vision was impaired, and he was unable to walk, sit up by himself, or communicate. The family knew the challenges he faced all too well—Anthony’s older brother Giovanni, 15, was born with the same condition.
So when the opportunity arose for early intervention for Anthony, the family wholeheartedly embraced it.
If you saw Madison Plaisance at her prom, you might have mistaken her for a princess. And she would say you were correct.
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.
Kevin DiLegge is a competitor. According to his mother, Mary, her son likes to do just about anything except sit at home. Now 26, Kevin was diagnosed with cerebral palsy as an infant. Thanks to innovative physical therapy interventions at Kennedy Krieger Institute, Kevin learned to walk for the first time with a gait trainer and began riding a bike on his own last year.