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Teacher shares lessons in love from son with rare disability

Bob Dotson profiles Jeff Wright, a high school teacher in Louisville, Kentucky whose son Adam has Joubert syndrome, a rare genetic disorder that causes him to harm himself.
/ Source: TODAY

Jeff Wright stoops to lift his 92-pound son out of a wheelchair. “And up,” he groans. “Oomph!”

Adam dangles from his arms, dead weight. Wright plods up the stairs in their home, carefully swinging the boy’s head over a banister. “Don’t want to bump your noggin,” he says with a smile, cradling the helmet on Adam’s head.

Wright once had dreams that his son might play football. Now Adam wears a helmet to protect him from himself. He was born with Joubert syndrome, a rare combination of genes that only about 450 people in the world have. It left him gasping for breath —180 times a minute, three times a second.

Jeff Wright and his son Adam as a baby.
Jeff Wright and his son Adam as a baby.Courtesy Jeff Wright

Adam is a bright little boy who is locked in a body his mind cannot control. He can’t speak or walk or even sit up. Wright paused at the top of the stairs. “There is not a day that goes by when we don't ask, ‘Why us?’"

Jeff Wright teaches physics at Louisville Male High school in Louisville, Kentucky. Trying to make sense of the universe, some of his students asked him to explain why this happened to Adam.

Jeff Wright and his son Adam as a toddler.
Jeff Wright and his son Adam as a toddler.Courtesy Jeff Wright

“I was asking those same questions the kids were asking me,” he said. So for the past 14 years — all of Adam’s life — the science teacher takes time each semester to talk to students about his son.

“He is extremely self-abusive,” he tells the class. “For instance, if he gets scared or he gets upset, he’ll just start taking his fists and pounding his face as much as possible. If he wakes up and I’m not there, he’ll roll out of bed and just start pounding his face on the floor. Lost two teeth one day.”

The Wright family: Father Jeff, son Adam, mother Nancy and daughter Abbie.
The Wright family: Father Jeff, son Adam, mother Nancy and daughter Abbie.Courtesy Jeff Wright

Wright and his wife Nancy, a nurse, work around the clock to keep Adam safe.

“We have bad days,” Nancy sighs. “We have good days. You focus on the good days.” Like the afternoon Adam first played dolls with his older sister Abbie.

“I told him to grab my doll for me,” Abbie says. “Then he just kind of smacked it.”

"Wait a minute," her father interrupted. "If he can kick a doll, then he can see."

So it turned out Adam was not locked in the darkness of his mind: He could see enough to learn a bit of sign language. One day his hands formed a sentence.

Adam and Abbie Wright.
Adam and Abbie Wright.Courtesy Jeff Wright

For his class, Wright now repeats the gestures Adam made that day. “What’s this mean?”

No one knows.

"Daddy, I love you," the teacher explains, wiping a tear from his eye. “That's when I realized that he was a person.”

What has Adam taught the teacher?

“If I can mean a little something to you and then you can mean a little bit of something to somebody else, then our lives have had a purpose. That’s what Adam taught me.”

Life can be unfair. Love can make it better.

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