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.
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.
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.
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).
I was surfing with my dad on a family vacation in Hawaii in 2006. I stood up on a wave and felt a small pop in my back, which began to hurt. I paddled in and tried to stretch my back, but it just kept hurting more. I felt my legs getting really tired. I walked a few feet and collapsed. That was the last time I was really able to feel my legs. I was 15.
I experienced a rare injury called surfer’s myelopathy. While I was surfing and turning to look back at the wave, my back hyperextended, which cut the flow of blood to my spine, causing some nerves to die.
My plan had been to become a professional quarterback. I told my dad that without my athletic ability, I wasn’t anything. He said that I was much more than an athlete and that we would get through this together. At that moment, I knew I would never use being in a wheelchair as an excuse not to do something or let it define who I am.
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.
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.
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.
Guillain-Barré syndrome (GBS) took away my independence. The disorder left me partially paralyzed and robbed me of my ability to walk, talk, and even eat. But thanks to Kennedy Krieger’s International Center for Spinal Cord Injury, I got my independence—and my lifelong dreams—back.
In January 2014, I became an inpatient at Kennedy Krieger. From the start, a team of supportive doctors, nurses, and therapists helped me come up with treatment goals. I was scared at first.
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