History buff finally sees Pearl Harbor thanks to TV show
By Catherine E. Toth
Advertiser Staff Writer
Imagine having cystic fibrosis, cerebral palsy, immune deficiencies, muscular dystrophy and cancer.
Gregory Yamamoto • The Honolulu Advertiser
That's what 23-year-old Scott Butler lives with, a multisystem genetic disorder called Ataxia-Telangiectasia (commonly called A-T) that afflicts only about 500 people in the United States.
Scott Butler, a Kentucky man who suffers from a rare degenerative disease, spent the past five days in Hawai'i with his mother Leann, left, and family friend Connie Griffith. CBS financed the trip through its "Week of Wishes" series.
Though the progressive, degenerative disease attacks the neurological and immune systems, it does not affect cognition. This is obvious when you talk to Butler.
A history buff and computer whiz, he talks up a storm about his favorite subjects. Ask him about Pearl Harbor and he'll give you details. Ask him about college and he'll share with you about his plans on majoring in computer science (with a minor in history).
And despite being wheelchair-bound for the past five years, Butler hasn't let it confine him.
He, along with his mother, aunt and family friend, spent five days in Hawai'i as part of "Week of Wishes," a segment on the CBS Early Show that fulfills viewers' wishes. The episode airs May 25. The family heads home to Kentucky today.
Butler had always wanted to visit Pearl Harbor. His parents couldn't afford the trip. And when his father died in January, a trip to Hawai'i seemed impossible.
Connie Griffith, a co-worker of his mother, wrote CBS about the family's struggles. The show's producers selected Butler as one of the wish recipients.
"It was the fulfillment of his dream," said his mother, Leann, with a tearful voice. "More than he ever expected."
CBS booked them at the Kamehameha Suite at the Royal Hawaiian Hotel. They took in the Perry & Price Hanohano Room Show, enjoyed a lu'au on the beach and spent a day at the Polynesian Cultural Center.
But the highlight of the trip for Butler was visiting Pearl Harbor and the Arizona Memorial. It was something he and his father had always wanted to do together.
"I was thinking about my dad and how proud he would be," Scott Butler said, "and how awestruck he would be if he were there with me ... But in my mind, he was there.
He was there in my heart and in my mind."
The disease has changed his life, but not his attitude about it.
The loss of his motor skills and coordination, the muscle deterioration of his lower extremities and a slew of respiratory problems hasn't stopped him for pursuing his goals.
Before his father died, he was enrolled in a local college, taking computer classes. He's constantly online and plans to volunteer at a preschool when he gets back home.
"Scott's never held back," Leann Butler said. "He never sits back and gives up. He's very courageous. He wants to do things. He never considered this disease a reason to give up. He's determined to go on and make the best out of every day he can."
He admits he wishes he could drive himself around and dance with his friends. But he doesn't let that get him down. He's appreciate of what he does have: A supportive family, great friends and the opportunity to vacation in paradise.
"It's just the way it is," he said.
