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Home › Dad of the Month

Harry Tembenis

By Kelly Burgess

Each month, iParenting.com spotlights a father who inspires and moves us, who embodies the qualities that we all admire in a person, a man and a father. Above all, the Dad of the Month is dedicated to his children. Rich or poor, famous or not, he shines as an example of what fathering is all about.

Harry Tembenis has experienced the worst a parent can endure. His son, Elias, passed away at age 7 after a prolonged seizure. While nothing can bring Elias back, Tembenis and his wife, Gina, of Worchester, Mass., take comfort in the work they're doing to raise awareness of autism and its related disorders.

Elias' short life made such an impression on everyone who knew him that fundraising effosts in his name and memory have raised many thousands of dollars for the National Autism Association's Helping Hands Program.

A Gift from God

Tembenis was an involved father from the moment he found out his wife was pregnant. He went to all her prenatal appointments, and the birth of his son was the greatest joy of his life. That joy extended to the entire family on both sides.

"Christmas the year Elias was born was the greatest high of my life," Tembenis says. "I had this beautiful son, it was his first Christmas, he was the first grandchild on both sides of the family, and everyone was just ecstatic. We felt he was a gift from God."

The day after that Christmas, Harry and Gina took Elias for his 4-month well-baby checkup. The doctor said he was perfect – healthy, growing like a weed and destined to become the future catcher for the Red Sox. Elias then received his scheduled vaccines. Tembenis recalls Elias screaming in a manner that seemed extraordinarily distressed, and it disturbed him a lot at the time.

That night, Gina heard an odd noise through the nursery monitor and went in to check on Elias. He was having a massive seizure. She called for Harry, and they rushed their son to the hospital and spent an agonizing few days with Elias in pediatric intensive care. He was released with the diagnosis of a seizure disorder, and the Tembenises went home to a life that was forever changed.

The Autism Foe

After Elias' diagnosis, things continued to get worse. Tembenis says it seemed like every time Elias had a pediatrician's appointment, his seizures got worse. He also was not developing normally – struggling with a variety of developmental and physiological issues. When the diagnosis of autism came when Elias was nearly 2 years old, it was no surprise.

"I had done a lot of research at that point and had read enough that I had even been in contact with people who were advocating for autism who described symptoms like Elias had," Tembenis says. "We were expecting the diagnosis."

From that time on, the Tembenises' lifestyle changed. The reading and research they'd done made them feel as if they could reverse Elias' diagnosis, so they made that their life's work. Gina was already a stay-at-home mom, something they'd planned since before Elias was even born. Tembenis left his corporate job to take a job on third shift to be able to be at home during the day to help navigate the maze of advocacy a special needs child requires. That included acting as a liaison between home and school, dealing with therapists, administering therapy and going to doctor's appointments. Tembenis also immersed himself in studying current therapies, theories and treatments.

And, amazingly, having the two of them devoting every waking moment to Elias was paying off. "When you get a synergy like that you get results," Tembenis says. "We took him from full-blown autism to making incredible gains in every area – socially, intellectually and physically. To see him coming out of his shell was incredible. We were literally weeks away from having his diagnosis of autism officially reversed by his school."

Then, in a cruel twist of fate, so close to that goal they'd shared for so many years, Elias experienced a prolonged seizure that brought on a cardiac arrest.

The Tembenises firmly believe that Elias' condition was caused by the bundled vaccines he received as an infant. It's a controversial stance, one that there seems to be a good amount of anecdotal evidence from parents to bolster, but that is rejected by the Centers for Disease Control and Prevention and, thus, is not recognized as a causal agent at this time. However, in Elias' case, there is enough evidence that the Tembenises have joined a class action lawsuit filed by Autism Omnibus that alleges vaccines caused autism in the 4,900 children represented in the suit.

"I was so focused on Elias for so many years, everything I did was devoted to making him well and helping him to overcome," Tembenis says. "If there is any silver lining to his death, it's that I have found this wonderful autism community and I can continue to bring my knowledge and experience to helping other families."

The Elias Tembenis Walk for Autism

On May 13, 2008, Robert Williams and Bobby Genese left San Francisco and started walking. Their goal was to walk across the country to raise money in memory of Elias Tembenis, who died in November of 2007 due to an autism-related seizure disorder. They arrived in Washington, D.C., on Election Day. In the process, they raised $30,000 for the National Autism Association's Helping Hands Program.

It started when Bobby Genese decided that he wanted to do something big with his life. A professional boxer, he'd already been active raising money for various charities by donating the proceeds from his bouts. But he wanted to do something that would really bring attention to a cause. He told his friend, Williams, about his desire, and Williams suggested that they walk in memory of the son of his friends, who had died just weeks before. After meeting Harry Tembenis, Genese quickly agreed with the cause.

"Harry is the capstone of strength of what a father should be like," Genese says. "He had been through the unthinkable and kept it together. I don't think I could have done that and I really admired him."

When they were first approached by Williams and Genese, the Tembenises didn't have a charity and hadn't started being active in autism advocacy because it was too soon after Elias' death. So Harry Tembenis started looking around for a worthy cause related to autism and found Helping Hands.

"The dirty little secret of autism is that so much of the therapy needed is not covered by insurance," Tembenis says. "All of the monies donated to Helping Hands go directly to families to pay for services they need for their children."

The National Autism Association is hoping to make the walk an annual event. Although the walkers arrived in Washington, D.C., on November 4, the ceremonial end to the walk was on November 17 in Worcester, Mass., with the Tembenises and many others cheering the walkers through their final two miles. It was the one-year anniversary of Elias' passing, and it was also the day that the news was filled with reports of a glowing celestial anomaly on Saturn.

"Elias' thing was planets and his favorite planet was Saturn," Tembenis says. "With the celebration of the final moments of the walk, the one-year anniversary of his passing and this amazing thing going on in the sky, it was almost as if Elias was giving us a message that everything was alright."

Learn more about the National Autism Association's Helping Hands Program at www.nationalautismassociation.org/helpinghand.php.



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