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Spotlight On… Kevin Heller
Community inspires a father of two to live to the fullest with ALS

“If there is a dream or a goal that you want, you have to go for it 100%.
Give ALL you have for the goals that you have.”
 – Alia Atkinson, four-time Olympian and 19-time All-American swimmer

Kevin Heller and his kids
Kevin with Michael and Lauren at a Giants baseball game in 2004

Kevin Heller is a person who always looked at the world with the mindset of a glass that was “half full,” rather than “half empty,” fueled by a strong foundation of faith, family, and friends. He grew up in New York, the second of five children, whose parents instilled a love of community, public service, and of the water.

“We lived near Long Island Sound, so our parents wanted to be sure we all could swim,” Kevin says. “My entire family became competitive swimmers and our parents, who also swam, became swimming officials. It became a big part of the Heller Family.” Kevin is often teased that he can’t remember many details about his youth because he was always in and under the water. “And, in many ways...it is true,” he acknowledged. “But swimming also created opportunities and friendships that provided a lifetime of wonderful memories for all of us.”

 

Kevin at West Point
Kevin at West Point in 1982

In 1979, the United States Military Academy at West Point recruited Kevin to swim, which began an enduring familial connection with the military. Following his graduation from West Point with a degree in engineering, he served in the U.S. Army for five years and was stationed in New Jersey and Georgia.

“After I left the Army in 1988, I immediately got into sales,” shares Kevin. “I started in chemical sales, leveraging my engineering degree from West Point but realized after a couple of years that it wasn't for me. I switched to medical sales for a few years but ultimately landed in software/tech, where I have been now for about 25 years.”

In March 1997, Kevin met his future wife, Lesley, at a medical sales conference in San Francisco. “We had our first date the day after we met. It was clear to me how special she was. Eleven months later, I moved from Boston to California with a one-way ticket to be with her. We decided to buy a house together in April of ‘98. In fact, we got engaged sitting on the front step of our new home on the day we took possession of the house! After spending the summer fixing it up, we got married in our backyard on September 12, 1998.”

Hellers at the Golden Gate Bridge
The Heller family in San Francisco in 2017

The couple welcomed their daughter Lauren in April of 2000 and then their son Michael in May of 2003. For the next fifteen years, the Hellers were busy with their work, school and church communities, and raising their kids. They were also very active in sports, and,with Kevin’s personal grit and perseverance, he frequently participated in triathlons.

Then, at the beginning of 2019, Kevin noticed something was wrong with his health.

“Swimming - which has been the single biggest part of my life in many ways - was also the thing that provided my first symptom early last year,” he recollects. “It was the inability to do flip turns and keep the water out of my nose that was my first symptom.”

Kevin participating in the Alcatraz Triathlon in 2009
Kevin participating in the Alcatraz Triathlon in 2009

“One day while we were on a trip, I noticed Kevin’s speech was suddenly slurred,” discloses Lesley. “It was dramatic. I was very concerned, and we started making doctor appointments immediately.”

All of this was happening at the same time that Kevin learned that his company, Looker, was being acquired by Google. “It should have been the happiest time of my life,” he reveals. “But I was filled with worry about what was happening to my body.”

Then, on July 16, 2019, doctors at the Forbes Norris ALS Clinic in San Francisco gave Kevin the diagnosis of ALS at the age of 58.

“I had not previously known this, but people who have served in the military are twice as likely to develop ALS. And the risk is increased regardless of which branch of the military you served in, where you were stationed, and even whether you served during war or peace,” says Kevin.

“Ironically, my step dad had battled ALS,” admits Lesley. “I had watched my mom care for him and knew about the disease through the experience. I never in my wildest dreams thought my husband would get it, too.”

Kevin’s ALS diagnosis led him and his family to connect with the Golden West Chapter of The ALS Association and to sign up for the Napa Valley Ride to Defeat ALS and Walk.

“Everyone is different - not everyone is as outgoing as we are - and might be apprehensive about getting involved,” says Lesley. “But because of the timing with the Napa Valley Ride - and Kevin's love of cycling - we got involved right away, and it has been so helpful. We never thought we would become part of the ALS community but have been blessed to meet some very amazing people and new friends through the experience.”

“It’s still very inspiring to watch my dad work out in our backyard and coach swimming (before quarantine),” states Kevin’s daughter, Lauren, 20, who is a sophomore at California Lutheran University. “Since he still has good use of his legs, he does a lot of exercises like he used to. He perseveres."

Michael kevin and lesley at Ice Bucket Challenge.jpg
Kevin with Michael and Lesley at Menlo Atherton High School ALS Ice Bucket Challenge in 2019

The Hellers have remained active in their community and are committed to raising awareness of the disease. In August 2019, Kevin and Lesley joined their son Michael and the Menlo-Atherton high school’s varsity water polo team in taking the ALS Ice Bucket Challenge, celebrating the fifth anniversary of the grassroots outpouring of support for the ALS community. Their daughter, Lauren, also organized an Ice Bucket Challenge with the California Lutheran volleyball team to inspire others to raise more awareness and money for the cause.

Kevin cycling at Pinnacle Peak in Scottsdale, Arizona in 202
Kevin cycling at Pinnacle Peak in Scottsdale, Arizona in 2020

While the disease has affected Kevin’s ability to be as active as he once was, it has not diminished his desire to achieve his personal goals. His previous participation in triathlons helped him develop a real passion for cycling, to which he remains committed.

“[It’s] the one thing I am still able to do since my diagnosis,” he declares. “Swimming is no longer possible due to the difficulty of breathing, and my arms being too weak.”

“I have been blessed with amazing friends, co-workers, and people that ALS has connected me with who every day prove that the world is full of people who care and are willing to do what they can to help when a tragic diagnosis like ALS is delivered,” adds Kevin.

Kevin at the 2019 Napa Valley Ride to Defeat ALS.png
Kevin addressing the crowd at the start line of the 2019 Napa Valley Ride to Defeat ALS

In 2019, Kevin and Team #GiveEmHeller of over 80 family, friends, and supporters raised more than $156,000 for the Napa Valley Ride to Defeat ALS and Walk, a record for an individual team in the 15 years of this annual event.

“The blessing of having ALS is that you get a community of people, friends, family, coworkers, who come around you to support you. It’s amazing. I mean, look around,” Kevin humbly proclaimed at the event’s start line. He credited his close circle with raising the funds that go towards vital ALS research and care services. 

“We are incredibly grateful for Kevin and his family, friends, and loved ones who give their time, talents, and energy to advance our Chapter's efforts to discover effective treatments and cures for ALS,” says Cliff Whitlock, Director of Team Challenge ALS. “Kevin is an example of what is possible with sky-high goals and unrelenting determination. He refuses to let ALS hamper his joy of living and always searches for opportunities to make a difference for others facing ALS.”

Team Give’Em Heller at the 2019 Napa Valley Ride to Defeat ALS
Team #GiveEmHeller at the 2019 Napa Valley Ride to Defeat ALS

Kevin has also been very active in research. He learned about an artificial intelligence system developed through Google called Project Euphonia and met with researchers last year.

Kevin working with developer at Google on Project Euphonia
Kevin working with developer on Project Euphonia

“They offered to create a voice for me using the [voice banked] recordings I already had,” he states. “I was able to use my ‘voice’ at a golf event in Phoenix, to share my story with everyone. It was the first time the tool had been used publicly.”

Although Kevin acknowledges the challenges that come with an ALS diagnosis, he remains appreciative of life’s blessings and is very grateful for his family.

“One of the things that I have learned from my battle with ALS is that it is a disease that affects more than the person diagnosed with it,” Kevin remarks. “In many ways, it impacts the family even more.”  

Kevin and Lauren

Being a child of someone with ALS is never easy,” says  Lauren. “It's been really hard watching my dad's abilities slowly decline over time. He used to be the leader of all/most conversations and would make everyone laugh. Now he cannot participate as easily as he used to in conversations, because writing or typing a response is slow and obviously not as fast as speaking.”

Lauren has taken her support of the ALS community even further through serving as an intern for the Golden West Chapter. For ALS Awareness Month, she created a unique way for people to show their support through a special template for Instagram Stories and shared her story as a part of the annual ALS Youth Action Day.

“It is very important to me that we continue to raise awareness for this disease,” Lauren declares. “ So much more can be done. We must never stop fighting and most importantly, never give up.”

Kevin and Michael

“This disease, although awful, angering, and saddening, has ironically, blessed us,” added Kevin’s son, Michael, 17, about his dad’s battle with ALS.  “We came to know how many friends, families, and communities are out there that support and love us.”

In a message to his father, Michael declares, “Dad - I’ve always been able to count on you. You’re my biggest fan and my biggest critic, but that’s what really helps me succeed and thrive.”

“When I heard about your diagnosis, I didn’t really know what to expect. I had no idea what ALS was or how it would affect me. I’ve decided that being positive is the best way to go about this situation.” 

Kevin with niece Maggie Renfield at her 2020 West Point graduati
Kevin with niece Maggie Renfield at her 2020 West Point graduation

Kevin, his brother, sister, and niece all attended West Point, and two of his nephews joined the Army through ROTC. Michael also plans to attend either the US Naval Academy or the US Air Force Academy next year. Recently, Kevin was able to see his niece, Maggie, graduate from his alma mater.

“The graduation ceremony of the Class of 2020 was very special and unique, given the COVID-19 restrictions they had to deal with,” admits Kevin, “But, most special of all, was being at the Parade Field (known as the Plain) to watch the Graduation Ceremony practice - when they played the National Anthem! To stand at attention and honor the flag of our great nation at West Point one more time felt like a gift from God.”

“It was a very special time,” concedes Lesley. “We had mixed emotions. We were full of joy to see our niece graduate, so happy to celebrate our patriotism, which is so important to us; and also very sad knowing that Kevin may not make it back to West Point, or his home where he grew up, again.”.

The Heller family on their steps for a neighborhood photo project during the COVID-19 shelter in place

With the celebration of both Father’s Day and Global ALS/MND Day on June 21, Kevin and Lesley have many reflections about the importance of raising awareness and generating support for other families facing ALS.

“It's a shame that Major League Baseball does not have an official ‘Lou Gehrig Day’! He is one of only three Hall of Fame players with a statue at Cooperstown, but is the only one of them without a day dedicated in his honor! That needs to change - he deserves the recognition and ALS, which is still commonly referred to as Lou Gehrig’s Disease, needs greater awareness. There needs to be more done to find treatments and cures!” says Kevin.

“Caregiving is a lot of work, but I know that Kevin would do the exact same for me,” acknowledges Lesley. “He has been an amazing husband and father, always putting us before himself. So now it's our turn to take care of him, and he deserves the best.”

Kevin showing his never give up spirit
Kevin showing his never give up spirit

“It's hard - very hard - and it's something I hope and pray that soon no other parent will ever have to deal with,” Kevin concedes. “I continue to be amazed by the support of friends, co-workers, church members, and everyone in the ALS community who step up to help out.”

“Please take the time to let the people in your life know how you feel about them. My amazing wife suggested something to me once, that I now do all the time. I make short video clips for family, friends, co-workers, and anyone else, and send them to them in a text or email with a short note. I can assure you...it's a gift they will cherish forever. Also, I recommend that you record your voice ASAP! It’s hard for me to not be able to say ‘Thank you’ in my own voice.”

“And...one other bit of advice - hug and love your kids. They will amaze you by how they deal with your diagnosis. Mine sure have. I am so proud of my two amazing children and love them with all of my heart!”

The Golden West Chapter thanks Kevin and the entire Heller family for their willingness to share their story, to advocate for other families living with ALS, and to raise awareness and funding to advance the search for effective treatments and cures through their participation and support of the Napa Valley Ride to Defeat ALS and Walk.

Kevin with his kids Michael and Lauren
Kevin with his kids Michael and Lauren on Memorial Day (2020) and Halloween (2009)