Tragedy To Purpose: Family Turns Horrific Tragedy Into a Purposeful Warning to Other Families
May 23, 2016 03:50PM
By Melanie Heisinger
By Kerry Pipes
Jeremy and Julie Lewis had an all-American family with two young children who loved sports and spending time in the outdoors. But in 2010 they faced an agony that no parents ever expect or want to endure. They lost their son, Kyle, to a rare form of infection caused by an amoeba he picked up while swimming during a family outing. He was just seven years old.
The trauma left the family heartbroken and with a desire to warn others about their tragic experience and the dangers of these deadly amoebas. So the couple founded Kyle Cares, an organization that exists solely to warn others about the danger of Naegleria Fowleri and other freshwater amoebas.
The organization is bolstering education and awareness of the risks and prevention, and working with doctors and researchers towards discovering a better diagnosis protocol and, ultimately, a cure.
Julie was willing to take some time out of her schedule and share not only her own devastating experience but her hope for other families as the medical world zeroes in on these deadly freshwater amoebas.
Tell us about Kyle Cares.
Our son Kyle passed away August 29, 2010 from Naegleria Fowleri, a freshwater amoeba that enters through the nose and causes a rapid and deadly brain infection. Through our devastation we realized we could make others aware of the risk of this deadly amoeba that had taken our son’s life. We began to spread the awareness through the media and social media and soon formed The Kyle Lewis Amoeba Awareness Foundation, or Kyle Cares, a nonprofit 501c3. Since 2010, we have held 9 golf tournaments, 5 Kyle Cares Summer Slam baseball tournaments, 5 MYBA Kyle Lewis Memorial baseball tournaments, a Bowling/Putt-Putt fun day and we just held our first Kyle's Mile and 5K. Through these events, as well as our social media connections, our hope is to save lives and heartache for other families. Since the beginning, we have worked hand-in-hand with the Centers for Disease Control's (CDC) National Center for Emerging and Zoonotic Infectious Diseases department expanding their awareness to the public and medical professionals as well as assist with donations to their research and publications of the amoeba Naegleria Fowleri. To date, The Kyle Lewis Amoeba Awareness Foundation has donated $30,000 to the continued efforts in research and awareness.
What are your goals and objectives for Kyle Cares?
Our goal for Kyle Cares is simply to make others aware of the risk of the amoeba Naegleria Fowleri that is common in freshwater with the hope of possibly saving other families from having to go through what our family has been through. We strive to reach as many people as we can whether it’s through our events, on social media or simply sharing Kyle's story with others. Kyle Cares provides awareness bands and asks people to simply look up KyleCares.com and become aware so they can protect their loved ones. We generate awareness with t-shirts and the logo and Kyle’s photo emblazoned on Jeremy’s truck.
Who is involved in operating the organization?
Jeremy and I are the founders and our awareness crew expands with family and friends. We are very blessed to have all the help that we do.
What roles do you and Jeremy handle day-to-day at Kyle Cares?
Jeremy handles the talks and any news interviews that are needed. At times it includes travel to other states to participate in other events for other foundations raising awareness of the amoeba.
I handle everything as it relates to the website, Facebook, literature and events. I also create all of the shirts, hoodies and merchandise that we sell for the foundation.
Explain more about Naegleria Fowleri?
Naegleria Fowleri, sometimes known as the ‘brain-eating amoeba,’ is a free-living, bacteria-feeding amoeba that can be pathogenic and cause a brain infection known as naegleriasis. You can find out more about it at www.kylelewisamoebaawareness.org.
Are there other similar diseases that people should be aware of?
Balamuthia is another very serious amoeba and could be even scarier because it has been found in dust and dirt.
How are awareness, prevention and treatment of these diseases changing?
We had never heard of Naegleria Fowleri before Kyle passed away and there was no awareness organization or foundation out there spreading the awareness. Since Kyle passed away, we have reached hundreds of thousands of people, hundreds of countries, and are thankful to be working with other families and the CDC in the mission of spreading the amoeba awareness. The CDC has expanded their website and information tenfold since 2010 but more research is still needed. The CDC now has a 24-7 emergency line that medical professionals can contact for information and assistance with a possible case of Naegleria Fowleri. In 2013, the CDC received access to a drug that they immediately implemented into their directions to medical professionals who were treating a possible case of this amoeba. There were two survivors that year; however, they had very different outcomes. This amoeba attacks and destroys so rapidly, awareness is the key!
In what ways has Kyle Cares been rewarding for you?
I don’t think we could ever say that it is rewarding because at the end of the day we still don’t have our son. We are blessed and thankful for all the support and love we are showered with from others, but we just wish we had known and wish Kyle was here with us each and every day. Together we keep the legacy and memory of our beautiful son alive by potentially saving other lives from being affected from this horrible silent unknown killer. Together we walk the walk that no parent should ever have to walk. Together we keep each other whole and moving forward each day for our beautiful daughter Peyton.
Have you faced challenges or obstacles in starting or operating Kyle Cares?
The goal of the foundation is to make others aware, but in doing so, we are continuously telling others how our son died, how our world fell apart, and it always brings back those horrible hours our son and family experienced. But we continue to do so in the hope that it does save another family from the pain.
Have you connected with other families or organizations like Kyle Cares around the country?
Since Kyle Cares was founded, we have made wonderful connections with other families around the country that know this pain. We are honored to share their loved ones stories on our website under Our Stories and we are proud to be working together. Days after Kyle passed away we received a letter in the mail from a mother who just lost her 14-year-old son to the same amoeba. We are now family! God's blessed us with Will Mathew's parents and his three handsome brothers who unfortunately all know this pain, but whether it's just dinner and laughter, hunting or shooting, or our phone calls and texts, we are walking this journey together.
In 2014, 11-year-old Jordan Smelski got the amoeba while swimming in a hot springs. His family has started a foundation and we are proudly working together to continue to spread amoeba awareness. The Jordan Smelski Foundation, in connection with Florida Health and Florida Hospital for Children, held the first ever Amoeba Summit in 2015 that Kyle Cares was asked to attend and speak at. It was a very informative event that we hope to continue.
How can people get involved, participate, and donate?
People can connect with Kyle Cares through our website where they can sign up to volunteer, print flyers or order awareness packets or merchandise and help us spread the awareness in their area. They can sign up for one of our events or they can make a donation to the foundation where 100 percent goes back into the awareness mission. We gladly have gone to schools and organization meetings to share Kyle’s story along with amoeba awareness and if anyone wants us to attend their event, they simply need to contact us.