Taevion Norris dreamed of playing basketball for Duke University and then turning pro while still in elementary school.
“It was a dream,” says 18-year-old Norris.
However, his sixth-grade gym teacher called his mother in the spring, worried.
“Taevion’s normally the first one in line, first one running in gym, first one finishing — but he said, ‘Taevion has started being last,'” remembers his mother, Tainica Norris, 41, of La Grange, Illinois.
The coach advised the single mother to see a doctor for her son.
Duchenne’s Muscular Dystrophy, a neuromuscular disorder that causes progressive muscle weakness, was Taevion’s diagnosis.
At twelve, he found it hard to believe.
Taevion claims, “I thought they were just making stuff up.”
His mother, a childcare worker, was unaware of the diagnosis. However, she claims that “everything just changed” after hearing the words.
Her son soon began experiencing difficulty climbing stairs, and during the COVID-19 pandemic, he lost the ability to walk altogether.
The senior in high school started throwing up all the time in March. He informed his mother that he didn’t want to miss school, so he didn’t want to visit the hospital.
According to Taevian’s physician Anna Joong, medical director of the ventricular assist device programme at Lurie Children’s Hospital in Chicago, Duchenne’s disease weakens muscles, including the heart muscles.
Joong claims that Taevian was “incredibly ill” and that “his heart failure was pretty significant.”
He was added to the heart transplant waiting list on May 1.
“He’s an amazing, amazing teenager,” Joong remarks. “He’s so easygoing and is just way more resilient than the rest of us.”
The 18-year-old worked every day to complete his final two months of coursework and graduate on time, even though he was in the hospital waiting for a new heart.
According to his mother, “he is very determined. He’s a hard worker, he loves school.”
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Taevion’s graduation ceremony took place at Lurie Children’s Hospital on May 21 because he was too ill to leave the hospital. As “Pomp and Circumstance” played, he was wheeled down a hallway crowded with his physicians and nurses, wearing a cap and gown, to mark his official graduation from West Leyden High School.
Hana Herrick, a 43-year-old school services coordinator at Lurie Children’s Hospital, says, “There were tears everywhere. I was just so proud of him.”
Taevion is currently in the hospital awaiting a transplant.
Tainica has launched a GoFundMe campaign to help raise the necessary funds for Taevion to be transported to physical therapy sessions and doctor’s appointments in a wheelchair-accessible car.
“Don’t give up,” he advised other children who are waiting for new hearts.
