In mid-July, parents, politicians, a Hollywood entertainer, a music legend, advocates and several autism VIPs gathered together in Massachusetts. The event was the 2nd Annual NOLAfest, and if I had the chance to bi-locate to be back in my former New England stomping grounds, this is one affair that I wouldn’t have wanted to miss. Unfortunately, I did miss it. Since this is an annual bash, maybe I can circle the date on my calendar for the 2011 festival. After reliving and reporting on the festivities, I feel as if I was able to participate in the spirit of the event.
On July 17, 2010, Harry and Gina Tembenis partnered with BA Events, a Massachusetts event promotion company to host the 2nd annual NOLAfest, a New Orleans Jazz/Blues Music and Food Festival in Worcester, Massachusetts. Designed to honor the memory of their son Elias, all festival proceeds went to autism fundraising and support groups that will directly benefit families of children with autism.
Harry and Gina are no strangers in the autism community. When their firstborn son Elias was very young, they went through the medical rounds of investigating poor health while visiting several specialists. Many of us have heard similar results before: Diagnosis: autism. Despite the grim words, Harry and Gina stayed focused and worked through whatever negatives they discovered. The Tembenis’ traced Elias’ medical problems back to the four-month round of vaccines in late 2000. After receiving four shots meant to prevent nine diseases, Elias began to have seizures. Despite that negative discovery, the Tembenis’ path included finding successful, biomedical treatment.
As Elias grew, with their son’s educators and therapists, the Tembenis family planned a school year with proper support and with dreams of hope. Harry and Gina learned as much as they could in order to make Elias’ life happy and hopeful too. Along the way, they learned about the how’s and why’s of vaccine injury and continued to help support Elias with biomed interventions. They had their sights set on one day reversing their son’s symptoms despite the vaccine injury causing seizures. However, in their struggle to restore Elias’ health, time was not on their side. Sadly, in 2007, Elias passed away from what has been described as a catastrophic seizure.
Elias’ diagnosis of seizures is not uncommon for other vaccine-injured children but to have suffered from them, and finally to succumb to a seizure disorder, is senseless. To make sense of the situation, and to make sure that other families are better educated on the effects of vaccinations, Harry and Gina have kept their feet firmly planted in the autism community.
Some parents may not be emotionally able to handle the public light of their child’s death. Families may quietly retreat from those who had supported their past and their child’s disabilities. Others may cut ties with all things autism related, preferring to close that chapter of their life and pray they can move on.
Not Gina and Harry. They have and plan to stick around the autism community long after Elias’ untimely death. Not one to let the past haunt their future, they shouted to the rest of the world: Elias will always be in their hearts and minds; he will live forever. From his death, new hope has grown across the country. Elias has been honored, his story retold, his spirit kept alive. He, along with his parents, continues to be a positive reminder of why some people in this community work tirelessly. Harry and Gina invited the world to share Elias’ story and have kicked it up a notch with the NOLAfest.
Why such a big festival? When Elias was younger, his favorite show was “Jacks’ Big Music Show” which featured jazz and blues music. Rather than mourn the dead but instead celebrate life, just as many do in New Orleans, the Tembenis’ are choosing to celebrate Elias’ life. They found the chance to do that with a big music festival. Remembering their time spent in New Orleans on their honeymoon, Harry and Gina created a celebration that brought many out to the streets for dancing and dining. And celebrate the festival goers did!
The National Autism Association, one of the groups to receive funds from the benefit, is represented by several board members and friends.
Wendy Fournier, President of the NAA, states, “We’re inspired everyday by Harry and Gina Tembenis. Their love for each other, for Elias, and for all of our children is beyond measure. They’ve put their heart and soul into NOLAfest and it’s become a wonderful family-friendly event with top-notch entertainment. I can’t wait for next year!”
Several National Autism Association friends and board members joined Fournier on a hot summer day for great food and amazing music. Kelly Vanicek reflects, “I had a wonderful time at NOLAfest. The music was great! Made you move whether you wanted to or not. The food was crazy, my favorite was the red beans and rice – YUM! Spent the evening chatting, rocking and laughing. It was a blast!”
Enthusiastic, committed and larger than life, Harry Tembenis is described as “the salt of the Earth” by Age of Autism Managing Editor Kim Stagliano. What Harry is doing for families of children affected by vaccine-induced autism is more than thoughtful; it’s genuine dedication.
Traveling four hours and a few states away were Holly Hagan and Becky Grant-Widen, also NAA board members. Becky recalls, “NOLAfest was a great event…we plan on to attend again next year and bring more Maine friends! Best of all, it was wonderful to see Wendy, Kelly, the Taylors, and of course, Harry and Gina. I wish we could get together like that more often.”
In keeping with the festival’s grand scale, some political leaders were invited to join in the celebration. While writing this story and collecting everyone’s thoughtful reflections, I received this from Tim Murray, Lieutenant Governor of Massachusetts, “The Tembenis family epitomizes the love and commitment shown by so many parents and families supporting children with autism. Thanks in part to their advocacy and passion, we are making great strides in treating and researching an eventual cure for autism. In an effort to support these families, Governor Patrick this month signed one of the most comprehensive autism coverage laws in the nation.” Mr. Murray’s wife, an OT who works with children, joined the NOLAfest also.
Also spotted at the NOLAfest were US Representative Jim McGovern and Senator Scott Brown, both of Massachusetts. Brown’s wife, Gail Huff, of WCVB-TV Channel 5 News in Boston and WJLA in Washington, DC, also came to support the event. On a day that everyday people, autism advocates and congressional politicos came together, one was also able to see a bit of Hollywood get into the act. Featured hit artist Charles Neville and the world-famous Neville Brother’s Band jammed on stage. Interestingly, Aaron Neville has been previously quoted about how his music helped a young boy with autism. Also on the scene was Ayla Brown of American Idol and CBS News.
Mary Romaniec also reported that local merchants contributed to the support of the jazz festival. Evo’s, a restaurant across the street from where everyone gathered is known to accommodate dietary challenges. They serve GFCF pizza and pasta dishes and catered part of the festival.
Harry and Gina welcomed other friends they have met on their journey to recover Elias from his vaccine injury. Families from the Mixed Martial Arts 4 Autism, the Autism Resource Center of Central Massachusetts and clients of ForgeWorks Farms came out to the festival to join in the fun.
With the huge confluence of autism families, advocates as well as supporters from the world of politics and entertainment, the newly created Elias Tembenis Sixth Planet Foundation can be named a success. Harry explains how they came up with the non-profit charity’s name. Besides Saturn being Elias’ favorite planet, Harry relates particular events that occurred almost two years ago when the idea of starting a foundation first came to Gina and him. He remembers, “On one particular weekend in November 2008 there were many events surrounding our son: it was the one-year anniversary of his passing, the National Autism Conference was held in his honor in Ft. Lauderdale, Florida, and it was the official completion of the Elias Tembenis Walk for Autism at the same conference (NAC). That SAME weekend, in what was making headline news throughout the world, there was a strange aura surrounding the planet Saturn that had all the world’s space agencies baffled. Gina and I saw that on the news and decided right there that we would name the charity Sixth Planet Foundation as that little planetary display we believed, was Elias’ way of telling us everything was ok...”
Fast forward to one weekend in July 2010; with the inspiration of a little boy who will never be forgotten, the Sixth Planet Foundation raised funds that will go straight back into the autism community. Those benefiting from the NOLAfest include the Sixth Planet Foundation, the National Autism Association’s Found Program and LoJack Safety Net/Project Lifesaver equipment. Scholarships will also be created to ensure funding goes directly to families requiring assistance with the $355/year Project Lifesaver costs. From an exquisite day of music, friendship and fun, the Tembenis’ have been able to share not just autism awareness, but a whole lot of autism action!
Because the Tembenis’ autism support reaches far beyond the local level, Harry feels that there is no coincidence in the signing of the autism insurance law for the state of Massachusetts just two weeks after their big celebration that honored Elias. While their own son’s life may have been cut short, other children will now have the opportunity to acquire services to move closer to full recovery. Elias’ parents are believers and have grabbed the chance to inspire many.
His first footprint, of when Harry and Gina started their journey with Elias, rests deeply on a trail this is turning into a paved road for other families. I only very recently got to know Harry personally, and it’s from a story I read late one night when I was feeling frustrated about some things going on in my life with my son. Back in June, on a Facebook status update that was shared ‘round the world, I regained the hope I felt I was losing. From his heart to ours, Elias will forever bless not only his devoted parents, but all of us who walk in and around the autism world:
From Harry himself, on why to never, ever give up: ”The awesome Father's Day present.... after being in an absolute depressed funk on Father's Day having to wish everyone else a Happy Father's Day... I was going to go take a nap before work (as I work overnights) and tried to hide my depression/funk from Gina as best I could. Gina, sensing I was having a lousy day ... said in a little prayer, "C'mon Elias , just give your Dad a signal; he's not having a good day". When I awoke and went through all the motions of getting up and getting ready to go to work, Gina was in our upstairs bedroom watching tv ...I gave her a kiss, said "good night" and proceeded to walk down the stairs in order to set the alarm and leave for work. As I was walking down the stairs, Gina said to me "try and have a good Father's Day, what's left of it..." "Yeah, yeah, yeah..." I mumbled under my breath as I walked down the stairs. In order to set the alarm, I have to go into Elias' old therapy/play room which has all his toys still in place from when God called him back. No sooner did I walk into the room , his electronic toys all started to light up and play ...like they used to when he was with us ... I looked quickly at the time... it was 11:50pm ...I sat there for 5 minutes listening to the toys light up and play music, completely overjoyed...then I thought to myself, I got to get this on video, I reached for and pulled out my cell phone camera and right then, they all just stopped... I felt a cool breeze on the back of my neck... and that was it ...the time was 11:59pm on Father's Day. HAPPY FATHER's DAY TO ME!!! No video, but the memory of a lifetime!”
Cathy Jameson is a Contributing Editor for Age of Autism
Friends and Supporters’ Links that Harry and Gina wanted to share:
Chris and Ted Mahan from ForgeWorks Farm who host Ride With Pride for therapeutic horseback riding and vocational horsemanship: http://www.forgeworks.net/
WEBSITE COMING SOON: The Elias Tembenis Sixth Planet Foundation: www.sixthplanet.org