Orlando Shoney Barrier was only 13 in January 1996, when he collapsed on the basketball court at Concord Middle School and never woke up.
Doctors at Presbyterian Hospital diagnosed hypertrophic cardiomyopathy, a rare, sometimes inherited heart disorder that usually goes undetected and can cause sudden death.
But Shoney lived, even though he never again spoke or walked or ate solid food. Doctors said he was in a persistent vegetative state, and after three months in intensive care, he was moved to a nursing home, where he lived for 17 years.
When he died last week, coaches, teachers and friends quickly raised hundreds of dollars to help pay for a proper funeral and burial.
Doug Doby, a football coach who had run to Shoneys side on the day he collapsed, coordinated the fundraising after hearing that Shoneys family needed help.
When the call came out, our community rose up, said Doby, whos now at Northwest Cabarrus Middle School. I became acquainted with Doby and many of Shoneys friends and relatives in 1996. With the permission of Shoneys mother, Paula Jordan, and assistance from his main physician, Dr. Marty Scott, and his social worker, Cynthia Davis, I was able to observe Shoneys care and sit in on meetings with the family.
In April 1996, I wrote a four-part series about Shoney and the unthinkable choices his family faced. (Weve posted it online at charlotteobserver.com/health.) The doctors gave them two options: He could have surgery, a tracheostomy. And with that, he could be weaned off the ventilator, and with a feeding tube, live for years. Or the family could choose to turn off the ventilator, take out the feeding tube and allow him to die.
Jordan chose the surgery.
Shoneys mother died several years ago, but over the years, many relatives and friends visited him at Mountain Ridge Wellness Center in Black Mountain.
Certain things I knew he could understand, said Darryl Barrier of Concord, Shoneys uncle and legal guardian. When he heard my voice, he would know I was there.
As a middle-schooler, Shoney was 6 feet tall and 150 pounds. Hed gotten the nickname Shoney after the restaurant chains Big Boy mascot. In the nursing home, he grew five or six more inches, into a 30-year-old man.
Concord Middle School teachers Brenda Todd and Jane Belo had each visited Shoney over the Thanksgiving weekend.
He was resting comfortably, said Belo, a longtime substitute teacher. I kissed his forehead. He was just so warm, and he smelled so good His life had meaning and purpose. He did not need to say a word. He did not need to walk a step. He just was.
When Todd visited, she said she talked to Shoney as if he could hear. He was very content. His eyes were always open when I saw him. Was he seeing me? I dont know He wasnt alone. We didnt want him to be alone.
When Dr. Scott, who now works at Wake Forest Baptist Medical Center in Winston-Salem, learned about the death last week, he was surprised Shoney had lived so long.
Although Scott said he wouldnt have wanted to be kept alive in Shoneys condition, he repeated what he told Shoneys mother in 1996:
The essence of what made Shoney Shoney died on the basketball court. I think the mom and the family struggled with understanding that . But I think every family makes the right decision, and thats what I always tell my staff. You dont know what you would do. Youve never been there.