Against All Odds
The day Sheiku Koroma was born in 1994, his parents had no reason to anticipate the challenges he'd face growing up. He seemed healthy at first, like any other newborn. But a severe infection combined with increased newborn jaundice led to an injury in the basal ganglia region of his brain, an area controlling movement and speech. As a result, Sheiku developed extraparymidal cerebral palsy, which affects his entire body and is accompanied by uncontrollable movements called choreoathetosis.
In Sheiku's case, these involuntary movements were so severe that almost from the very beginning his parents were told he'd never be able to walk. But last fall, he proved them wrong. After years of trying, intensive physical therapy and countless falls, Sheiku pulled himself up off the floor and took his first tentative steps. Today, 10-year-old Sheiku is able to navigate 75-foot hallways independently.
"Sheiku's success in walking is much more of a tribute to him than it is to us," says Dr. Alec Hoon, director of Kennedy Krieger's Phelps Center for Cerebral Palsy and Developmental Medicine and one of Sheiku's physicians since he began coming to Kennedy Krieger about four years ago. "You can see it in his face, his visible determination. Attitude is everything, and with Sheiku, he is absolutely committed to reaching his goals."
Sheiku meets with Kennedy Krieger physical therapist Jennifer Keller once a week. "Right now, we're working on walking slowly, between two lines," she says. "We are looking into bracing, learning to use a walker for school and waiting for him to receive his first power wheelchair. Although Sheiku can walk, right now it's not safe for him to walk without supervision since he still falls so often. And his uncontrollable arm movements keep him from pushing a conventional wheelchair on his own. But he'll be able to direct the power wheelchair himself, which will give him a great deal of independence."
According to Mariama Jalloh, Sheiku's mother, the fight for independence is at the heart of every milestone he reaches. "He's so highly motivated," she says. "He doesn't want his disability to stop him from doing anything, and that includes walking by himself." His indomitable spirit makes him an excellent role model for his younger brother and sister and an inspiration for the other students in his public school, whether they have a disability or not.
Next on Sheiku's to-do list: mastering his Dynavox assistive communication device. The basal ganglia injury also prevents him from speaking, and the involuntary movements in his fingers are so severe that it can be difficult for him to make the most of the device, which is controlled by a keyboard. It's a goal that will require Sheiku to keep up with the intense physical and occupational therapy he already receives, but Keller is confident he'll succeed. "All we need to do is provide Sheiku with the right environment for him to learn to do things for himself," she says. "He does everything else through his own determination. It just never occurs to him that he can't do anything."