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Heart Heroes, Make-A-Wish, & the Daytona 500

As part of the My Life at Speed team, I’ve been able to share some really great experiences and wonderful personalities with you all. This story is a little different. This is a story about Eli, an 8-year-old boy who’s endured three open-heart surgeries so far, who has the deepest love for NASCAR you can imagine, and who shines immeasurable amounts of light and joy everywhere he goes. I know his story very well. I’m Eli’s dad.

Eli is the second of three children. His older sister Paige loves nothing more than reading books, though gymnastics is a close second. Younger brother Sam is smart as a whip, and fearless. His interests are as varied as my own, and he’s fascinated with just about every corner of the world.

Eli was born in February 2009, but his story started in October 2008 when a sonographer from a small farming community found something strange at Eli’s 20-week ultrasound. She couldn’t figure out what she was seeing, but it wasn’t normal, so we were sent to the local Children’s Hospital for a closer look. In the weeks leading up to Eli’s birth, we learned about Eli’s heart defect, Hypoplastic Left Heart Syndrome (HLHS), and plans were put in place for when he would arrive. We learned he would need a staged set of three open heart surgeries over the first couple of years of his life in order to survive.

February 18, 2009. We were given a few short moments to hold Eli before he was rushed off to the life support he would need to survive until his first open heart surgery, 2 days later.

As mom went into labor and we braced for impact, the perinatoligist was contacted and the cardiac transport team for Valley Children’s Hospital was put into motion. Eli’s actual birth was perfect, and without any complication. Once born, we held Eli one time, the only time we would ever hold him without attached hardware or medical technology in his body. He was very blue, and we expected this. His heart condition didn’t allow proper blood oxygenation, and without major intervention, he would never survive. He would have his first open heart surgery before his second full day of life.

One half day after we handed Eli over to surgeons, this tiny little baby exited the operating room surrounded by a full team of nurses and what seemed like a warehouse full of medical equipment and a few miles of wires and tubing. He was immediately admitted into PICU room 2505, where we could be at his side. This would be our new home for the next 3 months.

Eli emerges from his first open heart surgery. This recovery in ICU would approach 4 months.

Eli would go on to receive a pacemaker, a handful of other minor surgeries and catheterizations, and an incredible amount of doctors appointments, blood draws, and visits to specialists over the next few years. At the age of two, he would have his second open heart surgery. During this 3-month recovery he would earn

Eli watches Cars during his second recovery stay.

his reputation as the “Cars kid.” Like many children, Eli was fascinated with the Disney/Pixar movie “Cars.” He watched it several times per day… every single day… while growing up in PICU. Friends, nurses, and doctors would bring him Cars themed gifts regularly.

A natural extension of the Cars movie, Eli developed a full-fledged fascination with NASCAR. He would watch it every week while playing with his friends, Lightning McQueen and Mater.

Once we were finally back home with normal life resumed, Eli discovered NASCAR, and it would never be the same again. On any given Sunday during the racing season, Eli would be found cheering on all the drivers (he has no favorites except “Anybody besides Kyle Busch”). We now keep up to date on the points standings regularly. We’re asked frequently “Where is NASCAR racing this weekend? What time? Will it be on TV?” Racing has become a normal part of our lives. NASCAR drivers have become household names and common parts of our daily conversations.

 

 

Working in the motorsports arena myself, Eli’s always just seen drivers as his friends. He’s one of the regulars at our local short track (Madera Speedway) where he’s come to know all the drivers personally. Sometimes I’ll see drivers post photos to their social media with Eli in them. They’ve all become just as much a fan of his as he is of them all. When he comes into the pits on race day, it’s not just as a fan, but as a friend, and he’s very intentional about making his rounds, checking in on every driver. When I can’t find him, I know I’ll discover him inside of the the drivers’ haulers, all having a good time.

Eli’s third open heart surgery would prove to be the biggest, the highest risk, the scariest, and ultimately the most rewarding. This surgery was 25 hours long and the recovery was extremely difficult. The time we spent thinking we had lost him, the miracles we experienced, and the stresses and emotions that accompany all of this would change all of our entire lifes’ perspectives. These were dark days. Eli turned 7 during this time.

Eli’s older sister Paige, 9 years old here, is unable to hold back her emotions, wondering whether or not her younger brother would survive recovery from this 25-hour-long, third open heart surgery.
Racing continued to be a part of Eli’s recovery. He raced Hot Wheels as part of his physical therapy during the 3-month-long ICU stay after his third surgery.
One of the bright moments during his third recovery was when his older sister and younger brother got to come stay with us for the entire Spring Break week. It was the first time in many weeks the entire family was living under one roof. They enjoyed many movies, many books, and many games all together. Eli’s recovery was noticeably accelerated during this time.

During the fall of 2016, we were encouraged to reach out to the Make-A-Wish Foundation. They responded in very short order, visited us to meet Eli and ask us to “Shoot for the stars” for his greatest wish. We knew it would be NASCAR, so we jokingly threw out the biggest NASCAR event there is, “How about the Daytona 500?”

“OK, let’s see what we can do!” they responded.

When they came back a couple weeks later with “Great news! You’re all headed to Florida!” we were speechless. With a limo pick-up in front of our home, a hotel right on Daytona Beach, 4 days of being overwhelmed at Daytona International Speedway, a Meet-n-Greet with NASCAR celebrity Dale Earnhardt Jr., VIP passes, a garage tour, an invitation into Victory Lane to watch the champagne shower over race winner Kurt Busch and team, a free day and spending money that afforded us the opportunity to show the kids Kennedy Space Center, NASA and SpaceX… “Overwhelmed and humbled” doesn’t even begin to describe our experience. The Make-A-Wish Foundation is an incredible blessing, and gave us… gave Eli… what we could never give on our own. We will never forget this time, and we will never be able to express enough gratitude to properly share how full our hearts were made.

On every leg of the flight to and from Orlando, the pilot would announce Eli as a special guest on the flight. He was also invited to tour the cockpit.
Eli on the high banks of Daytona Intentional Raceway’s front straightaway.
Tradition. Eli signs and kisses the finish line at Daytona International Raceway the night before NASCAR’s Daytona 500.
Dale Earnhardt Jr’s crew chief invited us in for a tour of the race garage and car. Eli even turned a torque wrench on Dale Jr’s engine. As parents, we were overwhelmed with the genuine care and interest in Eli’s story this team expressed. To crew chief Greg Ives, thank you for stopping us outside to spend more time with us and make us feel so important.
Meet-n-greet with Dale Jr. back at his trailer. We all had the opportunity to ask him questions. Eli had two questions. Eli asked who his favorite driver was, and whether or not he had a role in the upcoming movie “Cars 3.”
We spotted racing icon and legend Richard “The King” Petty, so he came to meet the Make-A-Wish kids. Eli commented “I remember you from the Cars movie!”
Eli’s excitement as he heard Owen Wilson (the voice of Cars main character Lightning McQueen) call out the four most famous words in motorsports, “Drivers! Start your engines!”
Aric Almirola drives the Petty Motorsports #43. We caught him in the hospitality booths. He stopped and made special time for all the kids, and then personally invited us as his special guests to Victory Lane, should he make it there. He finished the race in fourth place with three very dedicated new fans!
The Make-A-Wish Foundation put us in a hotel right on Daytona Beach. We walked out the back door directly onto the sand. Coming from California, it was a special treat for us to enjoy this ocean sunrise on our last morning, before heading home.

 

Written by Jason Wedehase

Jason Wedehase

I learned to use the camera at a race track because I was a gear head first. I thrive on the ability to tell a story, to stoke emotions and more than anything, to focus on the human condition in all parts of life.

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  1. Amazing. Such a beautiful and inspiring story of love, courage, and love. Hard to find a cause more important than helping children.