Local News

Monday, Dec 23 2013 08:50 PM

Teen receives extraordinary Christmas gift

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    By Rod Thornburg / Special to The Californian

    Santa Claus gives an eye-gaze communication system courtesy of the Make-A-Wish-Foundation of Central California to 15-year-old Raymond Lara and his family. Raymond has cerebral palsy and mitochondrial disease. He tried out the technology in front of his dad, Roman III, mom, Susan, and assistive technology instructor David Mensch.

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    By Rod Thornburg / Special to The Californian

    Raymond Lara, 15, and his parents, Roman III and Susan, check out the new eye-gaze communications system that was a gift Monday from Santa Claus through the Make-A-Wish Foundation of Central California. The technology will allow Raymond, who has cerebral palsy and mitochondrial disease, to better communicate. Friend and assistive technology teacher David Mensch is behind the monitor.

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    By Rod Thornburg / Special to The Californian

    Raymond Lara's mother, Susan, helps her 15-year-old son set up the eye-gaze communications system he received Monday from the Make-A-Wish Foundation of Central California at the American Legion Hall on H Street. Because of his cerebral palsy and mitochondrial disease, Raymond cannot communicate without the aid of technology.

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    By Rod Thornburg / Special to The Californian

    Raymond Lara, 15, who has cerebral palsy and mitochondrial disease, received eye-gaze communications technology Monday from Santa Claus, courtesy of the Make-A-Wish Foundation of Central California. Since Raymond is unable to speak, the electronic device allows him to communicate.

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    By Rod Thornburg / Special to The Californian

    Raymond Lara, 15, thanks Santa Claus, who through the Make-A-Wish Foundation of Central California, presented him with a special gift Monday at the American Legion Hall downtown. The gift, an eye-gaze communication system, will allow Raymond, who has cerebral palsy and mitochondrial disease, to communicate. Beside Raymond are his dad, Roman III, and his mom, Susan.

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    By Rod Thornburg / Special to The Californian

    Raymond Lara, 15, and his parents, Roman III and Susan, open a gift Monday from Santa Claus and the Make-A-Wish Foundation of Central California. The eye-gaze communications system will help Raymond, who has cerebral palsy and mitochondrial disease, communicate.

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    By Rod Thornburg / Special to The Californian

    With Santa Claus watching, 15-year-old Raymond Lara thanks well wishers Monday at the American Legion Hall downtown with the help of his new eye-gaze communications system. Joining him from left-to-right are his older brother, Roman IV, dad, Roman III, mom, Susan, Catherine Anspach of the Make-A-Wish Foundation of Central California, which purchased the technology, and David Mensch, an assistive technology instructor. Raymond's cerebral palsy and mitochondrial disease have prevented him from communicating, but the new technology will help.

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BY STEVEN MAYER Californian staff writer smayer@bakersfield.com

It's hard to imagine that Raymond Lara has never spoken to his family. The 15-year-old high school student has never been able to form his thoughts into words or share his dreams for the future.

And although his mother, Susan Lara, can see the world in his eyes, Raymond has never been able to say the words she longs to hear: "Mom, I love you."

Cerebral palsy, mitochondrial disease and other complex medical conditions have left Raymond unable to speak, unable to eat anything by mouth, even to swallow his saliva. He's a teenager trapped in a body that doesn't hear his commands.

"There are times when something is wrong, and he tries to get our attention," said Lara. "We know he needs something. What we've always done is try to guess."

But now there's hope for more than just guessing.

On Monday evening, as a small crowd of friends and well-wishers gathered at the American Legion Hall on H Street, a man sporting a red suit and a fluffy white beard delivered a Christmas gift to Raymond that could change everything, a gift his parents hope will open an avenue of communication between them -- and between Raymond and the larger world -- that he's never experienced before.

Thanks to the Make-A-Wish Foundation of Central California, which grants the wishes of children who have life-threatening medical conditions, a speech-generating device featuring hands-free eye-gaze technology was presented to Raymond at the surprise gathering.

The device uses imaging technology that records a digital portrait of the user's eye, then calculates the location of the user's gaze on the computer screen. By holding one's gaze on an icon or menu choice, the user can interact with the computer and generate words and sentences.

"It evaluates where the eye is looking," said Duane Law, CEO of Kern Regional Center, which assists thousands of developmentally disabled residents in Kern and other counties.

But because Raymond also suffers from nystagmus, a condition of involuntary eye movement, it's taken months of work with assistive technology teacher David Mensch and many others, including therapists at Centennial High School's special education program, for him to gain enough control to use the eye-gaze system.

"It's an extraordinarily liberating thing," Law said of the still-developing technology. "Raymond's family not only believes he can communicate, but that he communicates every day."

After months of rigorous therapy using the system, they discovered Raymond was learning to use it, communicating that he needed to use the bathroom. Such a seemingly everyday occurrence was a monumental accomplishment. But the family couldn't afford the $6,000 cost.

The process of denial and multiple appeals with their insurance company took more than a year -- yet ultimately went nowhere.

That's when Make-A-Wish came to the rescue.

"We call it the power of a wish," said Catherine Anspach, a spokeswoman for Make-A-Wish Central California.

Experience has shown the wish itself can be an instrument of progress and healing in children suffering from cancer and other illnesses, she said.

"We grant wishes to give children hope, strength and joy," she said.

As Raymond unwrapped his gift with help from his family, his eyes lit up as he realized he was getting an eye-gaze system that would be mounted on his wheelchair.

Raymond's system will begin with just a few menu choices. He can't read, so icons or pictures will be used for simple messages, such as hunger or thirst or the need to use the restroom.

"The system will grow with Raymond," Mensch said. "The more he learns, the more it will grow with him."

But he's still a teenager, and his personality is already reflected in his menu choices.

"He's kind of a little flirt," his mom said, laughing. "He has one that says, 'Hey, pretty lady.'"

Raymond's dad, Roman Lara III, said there's so much inside Raymond trying to get out.

"Raymond has a lot of love to share with the world," he said. "Who knows, we may have another Stephen Hawking here."

And while he also wants to hear Raymond express his love for his mother, elder brother and him, the sports fan has another hope as well.

"I can't wait for him to say, "Go Broncos!"

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