For the first time, Hooper family sees the bright mind inside child silenced by rare disease

ROY -- After nine years of life, Alton "Tre" Arnold weighs 29 pounds, has no use of his limbs and is fed daily through a tube.

Trapped in a broken body the size of a 2-year-old and suffering from a rare disease, Tre's only means of communication have been facial expressions and his dark brown eyes.

Now, after years of frustrating doctor visits, long nights, heartfelt prayers and loving care, his family has the key to unlock their silent angel's mind.

Thanks to a unique electronic device slightly bigger than a video game controller, four small wires and a laptop computer with basic software, Tre will be able to communicate and learn despite his severe disabilities.

This technology, pioneered and developed at Boston College and marketed by The Opportunity Foundation of America, is called EagleEyes.

"It's fun to see what's inside his brain," said Tre's father, Alton Arnold, as he watched his son visually kick a soccer goal on the computer screen and react with a big grin.

"Without it, we're just guessing. Now we know he can count from five backwards to one. It stimulates his brain. This is very exciting for us."

When the four electrode cables are taped around Tre's eyes, they track the muscle movements of his face and magnify them by a factor of 10,000 back into the electronic controller box and the computer, transforming his eyes into a computer mouse.

By focusing for a few seconds on the same spot or object on the computer screen, a single click is activated.

Those who see the light come on in his eyes know immediately that Tre understands what is happening.

"To see the enjoyment he gets from it ... makes any cost worth it," said Alton, a retired Army helicopter pilot and recruiter and currently a human resources manager at Comcast.

Much to the family's delight, Debbie Inkley, the founder and executive director of The Opportunity Foundation of America, a nonprofit organization, presented Tre with his own EagleEyes on Friday in front of Sarah Lynch's second-grade class at Roy Elementary.

Inkley said the EagleEyes unit requires a $1,200 donation to the foundation, with the money used to produce more units. Inkley said there are only about 20 systems out right now around the country, mostly for people using them at home or in schools or rehab centers.

"Many will only ever play basic games. Many will go on to communication boards, and a handful will be able to go on and be educated," Inkley said.

"But that is still light years ahead of sitting in front of the television and doing nothing."

Art Rice, Tre's Roy Elementary School special education teacher, was instrumental in bringing the EagleEyes into Tre's life. His wife, Sandi, is a member of the Opportunity Foundation's board of directors, and when Art mentioned that Tre could be a candidate, a test was immediately scheduled.

"We went to the school, met the parents and tried it out," Inkley said. "So many fortuitous things happened. We were supposed to meet this boy."

Tre's mother, Corrina, said the initial results were astounding.

"After nine years of caring, teaching and loving this child, I finally got the reassurance I needed to know that I was doing the right things," she said.

"He showed me that he could count and think at a higher level than I ever imagined."

As Tre becomes more familiar with the way EagleEyes works, his family hopes he will eventually be able to communicate and learn at levels previously considered impossible.

Discovering the diagnosis

Tre was diagnosed at age 2 with a rare condition called glutaric acidemia type 1. It is a metabolic disease that affects one in every 50,000 people. It can be detected in a newborn screening test, but wasn't in Tre's case.

Tre's body cannot metabolize the amino acid gluteral. As a result, his brain was permanently damaged and he lost the strength to hold up his head, Corrina said.

"His brain had no idea what his body was doing," she said. "As he got older, the symptoms just got worse and the list of surgeries got longer."

Corrina stays at home and cares for Tre's every need. His room is a replica of a hospital room. When he gets sick, which is often, she stays by his side through the night to make sure he gets his medicine and other needs met.

When mom needs a break, Tre's sister Aspen, 12, and Kirsten, 12, a friend who lives with the family, both shower him with love.

When at school, he is watched over by Art Rice and his special needs staff. Sandi Rice, who also works at the Utah Schools for the Deaf and the Blind, also provides assistance from time to time.

A blessing

Over the years, Alton and Corrina have spent countless hours at Primary Children's Medical Center in Salt Lake City and seen parents who love their disabled children -- as well as the parents who view their disabled children as a curse.

While their journey hasn't been easy, the couple has no doubt Tre is a blessing in their lives. He teaches them something new each day, and they help him live life to the fullest.

"He is considered terminal because he could die tomorrow. Not one day goes by when I don't think, 'Could this be the day?' " Corrina said.

The Arnolds have taken Tre white-water rafting and four-wheeling, and have let him ride a horse.

Tre loves to watch Tiger Woods play golf and smiles big when Tony Romo and the Dallas Cowboys take the field.

Corrina drew up plans for a motorized, combination wheelchair/four-wheeler that is being completed by a team of seniors at the University of Utah. The patent is pending.

His parents are confident EagleEyes will help him to experience even more.

Seeing the twinkle in the eyes of a severely disabled person and the smile on the faces of family members is hard to describe, Inkley said, but it's what she loves about her work. She has seen it time and time again. Tre is a perfect example, she said.

"His mom and dad will generally always know when there is somebody inside there. But when Tre realized it, it was like he was saying, 'My gosh, finally my world is going to open up to me.'

"You could tell by looking at him how bright that child is."

On the Web:

Learn more about The Opportunity Foundation of America

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