BATTLING THE ODDS; TWO LOCAL MEN HAVE RARE NEUROMUSCULAR CONDISTION THAT HAS NO CURE.

Byline: Enrique Rivero Daily News Staff Writer

Jess Baker wasn't aware when he was 9 years old that his body had begun betraying him. It took one of his teachers to tell him that something was wrong.

Jess was always bumping into things - he could barely get out of the classroom without hitting the door frame. His teachers were sufficiently worried to alert his mother, Judy, who took her son to a series of doctors and specialists, including UCLA neurologists who finally pinpointed the problem.

Jess, now 20, suffers from Friedreich's ataxia, an inherited, degenerative neuromuscular disease passed on only when both parents carry the flawed gene. It afflicts about 5,000 Americans.

Doctors told the youngster he would be in a wheelchair by age 20. They also said the disease affects the heart muscle, so he would have a short life.

``I felt a lot of anger that it was happening to me. I'm only 9 years old - why can't it happen to someone else?'' he recalls thinking.

As the disease progressed and he entered Thousand Oaks High School, he felt alone because he was the only person at school who had the condition.

But he wasn't alone for long.

During his sophomore year, another boy with Friedreich's ataxia enrolled at the school. Though he could talk to others with the disease when he went in for treatment, Jess felt some comfort in knowing there was a schoolmate with whom he could share his feelings.

``It was great that he went there so I could talk to him, but we never talked about it'' because the new student refused to discuss his illness. ``It was relieving knowing that someone else was out there right next to me. I mean, what are the chances?''

But when a third student with Friedreich's enrolled during Jess' senior year, he had a fleeting - and quite erroneous - suspicion that there was something in the environment causing the strictly hereditary disease.

``Those are impossible odds,'' he said.

No one could have been more amazed by the coincidence than Judy Baker, who had to watch as her once-athletic son weakened.

``I was shocked, but then I thought we could get a support group or get something done,'' Baker said. ``But I haven't found that, so it's like a bad secret that doesn't want to get out.''

Knowing there are others in the community with the disease, Baker has embarked on an effort to raise community awareness and money to research and combat it.

``These kids are still here,'' she said. ``They're living in the community and nobody knows about it.''

First identified in 1863, Friedreich's ataxia is marked by a progressive loss of coordination, weakness in the legs and jerky movements of the arms and legs. Victims frequently require a wheelchair.

Other symptoms include an inability to pronounce words and, in many cases, curvature of the spine. It also affects the heart, causing palpitations, breathlessness, chest pain and sometimes cardiac arrest. Diabetes develops in up to 40 percent of cases.

Symptoms usually appear in victims ages 7 to 13. Though the symptoms can be treated, there is no cure, according to the Muscular Dystrophy Association, which each year spends about $1.3 million on research into the disease and medical services for Friedreich's victims.

Only about 5,000 people suffer from Friedreich's ataxia, but more than 2 million people carry the flawed gene causing the condition, the Muscular Dystrophy Association said.

It's not entirely surprising to find more than one person with Friedreich's in a city the size of Thousand Oaks, with a population of about 115,000, said Massimo Pandolfo, the researcher who led the team that in early 1996 discovered the gene that causes the disease.

Though an uncommon disease, sheer chance could lead three unrelated Friedreich's patients to the same high school at the same time, much the way that four aces could wind up in a hand of poker, Pandolfo said.

```In a population like that you would expect to have two or three cases,'' he said. ``That they happen to go to the high school, it's not that incredible. It may happen.''

But it was incredible to Lee Ashworth, manager of the vocational Transition Partnership Program between the Conejo Valley Unified School District and the state Department of Rehabilitation.

It was Ashworth who first told Baker about the other Friedreich's patients at Thousand Oaks High.

``When the first one came in I said: What is this? I've never heard of this. I had to look it up,'' said Ashworth, who has been at her job about 25 years. ``When the second one came in I thought, this is nuts. When the third one came in I thought, wow! It was shocking.''

There are a few others in Ventura County with Friedreich's. One is Darrell Owens, 31, who lives in Camarillo.

As in Jess' case, it was someone else who noticed the symptomatic clumsiness associated with Friedreich's. For Owens, his mother spotted it when he was 11 or 12 years old. He was diagnosed at age 14.

About four years ago, his doctor told him about Jess and urged him to call Judy Baker. Jess and Owens now go to ataxia support groups together.

Knowing others with the disease helps him cope. And now Owens is aiding Baker in her crusade to raise public awareness and money to fight it.

He's going to help at the June 7 fund-raising rummage sale and barbecue organized by the Westlake Women's Club evening section, which Baker chairs.

``It'd be a way to be out there and help educate people about the disease and hopefully raise funds and have a good time that day,'' Owens said.

Beyond that, Baker is starting a campaign she calls Fight Friedreich's Ataxia to raise money for research.

If there were just one young person in the community with the disease, she doesn't believe she could garner much community support. But having three people with such a relatively rare condition in the same community - at the same high school - gives her cause` more urgency.

Now she must embark on her crusade, she said.

``I feel I have this opportunity to do it because there are three kids right here,'' she said. ``As a mother of a kid who has this, I feel I have to do this - if I didn't, I couldn't live with myself - then turn it over to God.''

The Westlake Women's Club's evening section will sponsor a rummage sale and barbecue to raise money for research into Friedreich's ataxia from 9 a.m. to 2 p.m. June 7 at Thousand Oaks High School, 2323 N. Moorpark Road. The club will accept cash donations and items for sale. For information, call Kathie at [phone] or Jan at [phone].

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Photo

Photo: (color in SIMI and CONEJO editions only) Darrell Owens, left, and Jess Baker share their fight against a neuromuscular disease.

Jeremy Greene/Special to the Daily News