Friday, November 30, 2007

Worcester, Massachussetts: Tribute to Elias Tembenis

Elias Tembenis, age 7

Continental walk to fight autism

WORCESTER — “One step at a time” is an apt description of life now for Harry and Gina Tembenis, who lost their only child, 7-year-old Elias, last November.

It also defines The Elias Tembenis Walk for Autism, a 3,000-mile walk across the country that their good friends, Robert Williams and Bobby Genese begin today in San Francisco.

Elias was diagnosed with autism when he was four months old. After watching the family care for Elias and then struggle to come to terms with the boy’s short life after what his father called an “absolute monstrous seizure,” the pair offered their help.

“They just came to us and said ‘we feel really bad about what happened,’ ” Mr. Tembenis said. “We thought they would make a donation in his name or have a fundraising party. And then they said ‘We want to walk across the country to raise awareness about Elias’s autism.’

“I’m honored, humbled and I’m very blessed to have them do this,” he said.

According to Mr. Tembenis, Elias began having seizures after his four-month checkup, when he received four vaccinations in one day for nine different diseases. Elias is one of 4,900 children represented in a lawsuit filed by Autism Omnibus that alleges vaccines caused autism in the children.

On Nov. 9, 2007, a landmark court decision came in the vaccine-autism debate when the division of vaccine injury compensation of the federal Department of Health and Human Services conceded the case of Hannah Poling v. Sec HHS, stating that the 9-year-old Georgia girl’s vaccinations aggravated her mitochondrial disorder, resulting in “features of autism spectrum disorder.”

Mr. Tembenis said that like his son, Hannah Poling appeared healthy until she received four shots for nine diseases in one day and suffered her first seizure. Should the Tembenis family receive money from the suit, it will be capped at $250,000, which would not cover the $400,000 they have in medical bills.

“This isn’t about getting rich. It’s about accountability,” Mr. Tembenis said. “The doctors were pretty tight-lipped, but being parents, we knew something was wrong.

“What the guys are doing goes a long way in leaving a legacy to our son,” he said.

Both 36 and single, Mr. Williams and Mr. Genese last week packed their belongings and headed to California. To make the nine-month trek, Mr. Williams took a leave of absence from Diorios, the hair salon owned by his family on Plantation Street and from his work as a rigger at the DCU Center and Hanover Theatre for the Performing Arts.

Mr. Genese is a familiar boxer in the city. He fought most recently in an exhibition bout against Jose Antonio Rivera at the Palladium during the annual event presented by the Worcester Police Gang Unit Boxing Club. He left his job at Jillian’s on such good terms that the company’s franchise in San Francisco held a sendoff party in the walkers’ honor Sunday.

“What they’re doing means the world to us,” said Heather Nejaimey, the sister of Gina Tembenis. “They’ve put light into a situation that was really dark.”

During their walk along Route 50 and the American Discovery Trail, each will carry a backpack of basic supplies. On their way out to California, they buried water in the desert and food is being mailed to post offices situated every 50 to 70 miles. They expect to end their walk in Washington, D.C., before Christmas.

With support from the National Autism Association, fundraising events will be held along the walk to help them reach their goal of raising $1 million.

But between a couple of sendoff events in Worcester, and a few corporate sponsors, they raised $22,000 before they even took one step in a warm-up walk over the Golden Gate Bridge yesterday.

“It was a pretty thrilling experience,” said Mr. Williams. “It was foggy, so you couldn’t see the top of the bridge, but it was still pretty breathtaking.

“I’m feeling excited and overwhelmed. … After all of the planning, determining where to have the meal drops, burying the water last week in the desert, thinking of the gear that I want to be on my back for the next six months. It’s very surreal.”

Included in that backpack is some solar-powered equipment, including digital recording cameras that will document their travels.

Miss Nejaimey will post the pictures on Spectrum Magazine, an online publication for families of people with autism and developmental disabilities, is featuring them in its June issue at and is doing a profile at the end of June.