Kokayi's Story

The Fight of His Life

Kokayi's Story

After a brain tumor blindsided Kokayi and left him without the ability to walk, talk, or even swallow, he fought to get his life back.

This is not going to be my life. This is not going to be the new normal. This is temporary.

Kokayi Thomas

Fifteen-year-old Kokayi Thomas had always been healthy and athletic, until last November when he started complaining of weakness in his right arm and leg. After a visit to the pediatrician, a battery of tests, and an MRI, Kokayi and his parents were shocked to hear the diagnosis: Kokayi had a brain tumor. Although considered low-grade, the tumor—pilocytic astrocytoma— was located on his brain stem. “In that one moment, with those few words, our world turned upside down,” recalls Kokayi’s mother, Debra Jeter-Thomas.

Kokayi underwent a suboccipital craniotomy to remove the tumor. The surgery was successful, but because the cerebellum was affected, Kokayi experienced a lack of muscle coordination and could not walk. He had increased weakness on his right side, and tremors. On top of that, he lost the ability to swallow effectively, had difficulty speaking, and experienced blurry vision.

At Kennedy Krieger’s inpatient rehabilitation unit, Kokayi underwent intense therapy, including physicaloccupationalspeech, and neuropsychological, and steadily made progress. Soon, he was stable enough to be transferred to the Specialized Transition Program, the Institute’s outpatient day program.

When physical therapist Katlyn Recchia first began working with Kokayi, he couldn’t walk without assistance or navigate his wheelchair, but he was determined to recover. Recchia told Kokayi that eventually, he would be able to walk to the top of the stairs at Kennedy Krieger and see the harbor. Two weeks later, they tried two flights of stairs, but Kokayi surprised her by saying, “We’re doing all four. I’m going to look at that water.”

“Kokayi has a great attitude, which is half the battle,” says Recchia. “He’ll say, ‘I don’t necessarily want to do this today, but I know I have to. I want to get better.’ You can’t ask for more out of a patient.”

Each day, Kokayi worked with the therapists on his short-term goals, and when he met those, they set new ones. Through aquatic therapy, body-weighted support treadmill training, and other exercises, Kokayi made enough progress to walk short distances and climb stairs, and became much more independent with his wheelchair.

Kokayi’s parents credit the staff for helping him stay motivated. “Kokayi had a very talented and skilled group of inpatient and outpatient therapists who worked with him,” says his father, Dr. Duane Thomas. “The staff made Kennedy Krieger a home away from home. I can’t even put into words all the things they did on his behalf. Without their encouragement and dedication, he could not have made the progress he made.”

“I’m just so proud of him,” says his mom. “I don’t know too many people who can go through a trauma like this and maintain that motivation. He never gave up.”

His parents attribute his success to Kennedy Krieger’s ability to bring together the science of rehabilitation with therapists who know how to motivate patients. As Kokayi’s father explains, “It’s sheer art plus science.”

With the assistance of educational specialists at the Institute, Kokayi returned to school in the fall with all the needed services in place.

Kokayi still has goals he would like to achieve, and will continue to work hard in outpatient therapy to achieve his potential. “He’s fought his way back, and he’s still fighting,” says his father. For Kokayi, the challenges he has faced from his brain tumor are mere stepping stones.

“This is not going to be my life,” says Kokayi. “This is not going to be the new normal. This is temporary.”

Kokayi has a great attitude, which is half the battle. He’ll say, ‘I don’t necessarily want to do this today, but I know I have to. I want to get better.’ You can’t ask for more out of a patient.

Katlyn Recchia, physical therapist

Kokayi's Story on WJZ-13 CBS Baltimore