Meet Uplifting Athletes 2019 Rare Disease Champion Team member Sam Heckel from Syracuse University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Sam Heckel

University: Syracuse University

Vitals: 6-4, 280-pound, redshirt junior, offensive line

Quick Hits: A native of Wisconsin, Sam lives with congenital thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins. In order to help his body manage this rare disease, he must undergo 14-20 hours of plasmatherapy every two weeks, including during the football season. When he arrived on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him. He attended the Leadership Development Conference in 2018 and 2019 and has been the Syracuse Chapter President the past two years. A full-time starter in 2017 on the Orange offensive line, Sam rotated as the sixth man in 2018 and played in every game. This season he earned the job as the starting center before injuries forced him to the sideline early in the year.

INSIDE THE STORY

From the time he nearly died while in elementary school because doctors struggled to diagnose his rare disease, Sam has faced long odds as an athlete.

His TPP diagnosis would require monthly treatments for the rest of his life.  At one point he wasn’t sure doctors would even allow him to play contact sports and Sam was always balancing his medical condition with being an elite athlete.

His dream to be a Division 1 college football player drove Sam on the field, in the classroom and at the hospital. With the help of a strong support team, led by his family, a scholarship to Syracuse allowed him to realize his dream.

The demands of being a student-athlete kept Sam inside that bubble of structure and routines he already was familiar with. Practices, workouts, meetings, classes and studying – the routine of it all was very comfortable to Sam.

“It’s almost a miracle that I got to be a college football player and am living my dream,” Sam said. “All throughout my life I’ve had to rely on other people … my parents, doctors, trainers. Whenever I wanted to do something, I had to rely on other people so much.”

It took a strong and dedicated support team around Sam just to make it to Syracuse, and once that circle of trust expanded in college, it was easy for him to find success.

He was a starter sooner than later for the Orange along the offensive line. Sam filled in at a couple spots up front in 2018 and became an experienced veteran. Coming out of camp prior to the 2019 season he was named the starting center. Once again Sam overcame the odds and was poised to take that next step as a football player.

In the first game of the season, Sam suffered his third concussion in 13 months. And the odds were simply too stacked against him with three head injuries in such a short period of time.

He worked through the recovery protocol as instructed, continued to stay involved with the team and held out hope of once again stepping on the field inside the dome at Syracuse to play the game he dearly loves.

The biggest challenge in his life, overcoming his rare blood disorder to play football, didn’t keep him off the field. Three concussions did, though.

Sam was medically disqualified from ever playing football again following the 2019 season. It was a sudden end he admits, but also said it took him about a minute to accept the diagnosis.

“Being a collegiate athlete, everyone knows it’s going to come to an end. I just didn’t know it was last season. The suddenness of it, that was the harder part for me,” Sam said. “It was a difficult transition for sure, having that taken away from you. I wasn’t used to being a non-athlete.”

Sam is still adjusting to life as a student instead of a student-athlete. He plans to remain involved with the team, helping out the younger players and doing what he can to make a positive contribution to the football team. It’s what he worked so hard to do on the field. Now he’s re-directing that same passion and energy in another direction.

Despite being medically disqualified, Sam will remain on scholarship at Syracuse. He will receive his undergraduate degree in the spring, stay involved with the team in 2020 and begin work on his Master’s degree.

“I still feel like I’m still trying to grasp who I am outside of being a football player,” Sam said. “I’m figuring out it’s all about re-directing your energy as a person. Now I can re-direct my energy in different directions. I have time, and I get to choose a little more what I had to put my energy toward.

“I’m more independent and rely on myself more, and I’m enjoying it. Football and Syracuse gave me everything I ever needed and wanted. I’m so grateful for that. That’s why I feel I have to stay involved and give back.”

THE RARE JOURNEY

Sam was born with thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins.

Early in his life, obtaining an accurate diagnosis was difficult and once doctors were able to pinpoint his rare disease, coming up with a functional treatment protocol proved tricky as well.

For most of his life, Sam received 14-20 hours of plasmatherapy every three weeks. It was a day-long process that also came with a couple days of recovery to feel normal. Despite nearly dying when he was in elementary school, Sam’s treatment allows him to live a normal life.

He was a star offensive lineman during his high school days at Waukesha West in Wisconsin and that landed him a scholarship offer from Syracuse.

Playing major college football was always the pie-in-the-sky dream for Sam and getting recruited to upstate New York allowed him to fulfill that life-long goal.

As a kid growing up, despite his rare blood disorder, Sam wanted to be on a level playing field with his peers. He didn’t want to be known as the football player who also had a rare disease. So he was extremely hesitant about sharing his journey.

That changed when he arrived at Syracuse.

Once on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him.

Still reluctant to talk about his rare diagnosis because he preferred to let his play on the field speak for itself, Sam soon discovered he had a story to share that needed to be shared. Inspired by his work as a leader of the Syracuse Chapter, Sam learned his voice is strong and his platform as a college football athlete is significant.

WHAT THEY SAID

“I feel like with the position I was in with Uplifting Athletes, I realized there are some kids out there right now that are in the same shoes I was in growing up. And if what I went through can help them … give them some hope in any way and let them know they can still have hope no matter what they are going through, they need to know that. You can’t let a health issue determine what you are going to do with the rest of your life. I know the Rare Disease Community doesn’t have a lot of athletes out there, and I’m one of them. So I had to do what I could to help.” – Sam Heckel

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