Jim Ott's Blog

This blog is a collection of columns I've written for Bay Area News Group newspapers serving the East San Francisco Bay region.

Monday, May 24, 2010

A shorter version of this column and this photo appeared in the Valley Times and the Tri-Valley Herald in May 2010.

This is a story of two inspiring people whose lives connected 12 years ago in an elementary school in Pleasanton, California.

Josh Burger is a senior at Pleasanton’s Amador Valley High School, and Patricia Poor has been his aide since he was in first grade.

“I only expected to work with Josh for a year because doctors predicted he wouldn’t live very long,” said Poor, who lives in San Ramon. “But Josh surprised us all.”

In fact, Burger was expected to live only a few minutes after an ultrasound showed a disfigured 20-week fetus.

“The doctors recommended abortion,” said Burger, who weighs just 32 pounds. “But my parents believed God created me for a reason and it wasn’t their right to end my short life.”

Called Atelosteogenesis Syndrome Type III, Burger’s condition is so rare that fewer than 10 people in the world have it, and he’s the oldest-known survivor. Every bone in his body is misshapen. He has only one functional lung and an enlarged heart. He’s missing bones in his legs and can’t walk. He can’t bend the fingers in his right hand. He is deaf without hearing aids, didn’t speak until age 5, and was born with a cleft palate.

Yet Burger beat the odds and survived his first years of life. Determined to have her son experience life to the fullest, Burger's mother enrolled him in first grade. There they both met Patricia Poor.

Born in England, Poor moved to southern California in 1970 in her early twenties. She eventually moved to the Tri-Valley where she earned her associate of arts degree in Special Education at Chabot and Las Positas Colleges. With this training, she applied to become a special aide for a special boy, and she got the job.

“I’ve enjoyed assisting Josh,” said Poor, who has the distinction of being one of the only adults to attend every single grade all over again as the boy became a young man. “Josh has a positive outlook and every day says something to make me laugh.”

For Burger, his outlook on life has not always been so positive.

“In second grade I realized I was different from everyone else,” he said. “I was frustrated when I couldn’t ride a bike or hold a pencil right or wear shoes.”

Burger’s frustration turned into tears and anger. “I was mad at God,” he said.

But after several months, his anger ebbed as Burger realized that “maybe my little body was God’s gift to me and what I did with it, and with my life, was my gift back to Him.”

According to Frank Burger, Josh’s father, Poor played a vital role 7 hours a day, 180 days a year for 12 years encouraging and protecting his son. “Josh has learned to be more independent through her nudging,” he said. “We’ve never worried about him because of her guiding care and how she taught other children to show respect for him.”

Today, Josh Burger gets around lying on his stomach on a motorized wheelchair he controls. His accomplishments include meeting George Bush and helping raise money for Paul Newman’s Painted Turtle Camp for disabled kids where he met celebrities such as Tom Hanks.

After Hurricane Katrina, Burger raised relief funds by getting a Mohawk haircut, wearing wrap-around sunglasses and having a Chihuahua stand on his back as he patrolled the Pleasanton Farmer’s Market for donations. He and his friends raised $30,000.

In June, Burger and Poor will say their goodbyes as he graduates and she retires. Like his aide, he plans to attend Las Positas College. Although his prognosis and life expectancy is unknown, Burger looks forward to discovering what’s next after graduation.

“Like everyone, I want to do something with my life," he said. "Something great.”

1 comment:

she said...

one of the most inspiring stories! -thank you to josh, his family, this wonderful patricia

what a bond they've created, and what accomplishments

my prayers/blessings and big congratulations!

keep up the great work josh ~being you!

love, ~s.