Resource Finder at Kennedy Krieger Institute
A free resource that provides access to information and support for individuals and families living with developmental disabilities.
A New Life, Half a World Away
In rural Africa, where 3-year-old Fabian Ndungu Githinji was born, his mother Maureen could feel the eyes of her neighbors on her when she held Fabian, and hear their whispers behind her back. It was obvious that Fabian was different, with his abnormally large head and delayed development. In her culture, many still believed that children with developmental disabilities were a bad omen or a curse. Their stares said it all: “Those are the kind of children she makes,” and knowing that Maureen had previously had a daughter who died of cancer added more support to their paranoia. Maureen and her family—her husband Patrick, daughter Francisca, and Fabian—lived in a constant state of fear and were ostracized by their own people. Even in this modern age, it is not unheard-of for children with developmental disabilities to be abandoned, chained, or even drowned in Africa.
Maureen and Patrick began to fear for their son’s life. Maureen took Fabian to a local doctor and was eventually referred to the best hospital in Africa, where he was diagnosed with Dandy Walker syndrome—a congenital brain malformation—in addition to hydrocephaly and cerebral palsy. The doctor’s prognosis was grim: Fabian would have severe cognitive and physical limitations, and his head would continue to swell and would eventually shut down his brain. The doctor told Maureen to go home and accept Fabian as he was—there was nothing he could do.
Hope Through a Cyber Café
Maureen refused to accept that there was no hope for her son. She knew she had to try to find him help. Every day she walked from her family’s farm to a cyber café in the nearby village to research treatment options for Fabian. She searched online for “best pediatric neurosurgeon in the world,” and found the name of renowned neurosurgeon Ben Carson. She wrote to Dr. Carson and sent Fabian’s medical history, and heard back the words she had been hoping for: “We can help your son.”
The family received assistance that helped pay for plane tickets for Maureen and Fabian to fly to Baltimore. When she got on the plane, she didn’t know if she would ever see her daughter or husband again, but she knew she had to try to save Fabian’s life.
When they arrived in Baltimore, they had little more than the clothes on their backs, but Maureen was driven by the quest to find treatment for her son. She took Fabian for a comprehensive initial evaluation with doctors from Johns Hopkins neurosurgery and Kennedy Krieger neurology and orthopaedics, where she learned that occupational, physical, and speech therapy would help Fabian’s developmental delays. But the most powerful moment came when Kennedy Krieger attending orthopaedic surgeon Charles E. Silberstein, MD, told her what she had always hoped to hear—that her son would one day walk.
Fabian underwent brain surgery to treat his hydrocephalus, and the surgery was a success—but he still needed therapy, and the family had no money, no insurance, and no place to live. Maureen feared being sent back to Africa, where Fabian’s life could be in danger and he wouldn’t have access to the therapies he desperately needed.
It Takes a Village
Along the way, Maureen told her story to child life specialist Anna Hernandez, who began reaching out to resources within the Institute on Maureen’s behalf. Anna introduced the family to Alexander Hoon Jr., MD, who agreed to see Fabian at the Institute’s Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine despite the family’s limited financial resources. Dr. Hoon was so moved by Maureen’s story that he connected Maureen with his personal attorney. Anna and Dr. Hoon also called the Institute’s director of social work, Mary Snyder-Vogel, who along with her team facilitated dozens of contacts to help secure legal representation for Maureen through the Immigrant Rights Clinic at the University of Baltimore School of Law. Dr. Hoon wrote an affidavit for Maureen to request asylum so that Fabian could stay in the country and receive the treatment he needed. Within months, Maureen’s husband, Patrick, and her daughter, Francisca, came to the United States, and the family was reunited.
As Fabian continued to improve, the family was connected to the Institute’s affiliate PACT—the only program in Central Maryland that offers specialized child care for children with complex medical needs, as well as support for families. There, Fabian received the critical child care his parents needed, in addition to occupational and physical therapy. “We look at children holistically and provide a really rich environment for them,” says social worker Mary Coster.
When Maureen shared her story, Mary sprang into action, helping them find a place to live and securing donations from PACT, Institute employees, and their extended family and friends for needed items, including furniture, food, clothes, toys, beds, a computer—everything they needed to make a home. “I can’t even describe it,” says Maureen. “Having strangers care—people who don’t even know you reaching out to help— it means so much. I never knew strangers could be so kind, loving, and caring.”
Daring to Dream
Indeed, 3-year-old Fabian seems to be thriving. He grins widely as he tries to take a few tentative steps from his mother, Maureen, to Mary, who hugs Fabian, while his mother, father, and sister clap and cheer. Other children his age are running and climbing, but for Fabian, learning to walk will be a new accomplishment. He is a remarkably happy child, given all that he’s endured. According to his mother, he spends hours smiling and “talking” to himself in the mirror. “Fabian is a joyous child,” says Mary. “He’s so full of life.”
In June, the family received official notification from the Department of Homeland Security that they were granted asylum to stay in the U.S. They are now eligible to work and receive medical coverage for Fabian’s care so that he can get the therapy and equipment he needs to continue his progress.
For Maureen, knowing that Fabian will be safe from harm, receive the therapies he needs, and grow up in a society that values him is more than she ever dreamed possible.
“I never imagined this could happen,” she says. “We came to this country with no family, but now through Kennedy Krieger and PACT, we have a very large extended family.”