Defying the Odds: How Nate Haverko Turned His Rare Condition into Motivation

Nate Haverko will make the move from Alberta to Moncton come September when he will attend Crandall University in the ACAA. (Photo submitted by Nate Haverko)

OKOTOKS – As he gets set to begin his post-secondary career as a student-athlete with the Crandall Chargers Men’s Volleyball Program in the Fall, Nate Haverko is hoping to continue inspiring others with his condition through his own battles with cystinosis.

“Cystinosis doesn’t have to control your life,” said Haverko. “The biggest thing is just getting cystinosis on the map to help push for a cure so that generations after me don’t have to worry about living their whole life with a rare genetic disorder that could put barriers on their life.”

“I’ve defied odds my whole life.”

As he gears up to play volleyball in the Atlantic Collegiate Athletic Association (ACAA) for the Chargers next season, it was never a certainty that Haverko would play sport at all, let alone volleyball at the collegiate level.  

Haverko has been living with a rare condition called cystinosis from when he was six months old and has been defying the odds every day since.

As defined by the National Kidney Foundation, cystinosis is a disease caused by an abnormal buildup of a certain amino acid called cystine. It is a rare but serious disease with a lifelong impact, and it can affect many different parts of the body.

The condition was so rare that at the time when Haverko was officially diagnosed, the doctors weren’t quite sure what was wrong with him.

“The doctors actually thought my mom was making up that I was sick,” continued Haverko. “I was six months old and we didn’t know anything about it; even the doctors were very uneducated on the condition at the time.”

“My mom stayed persistent and eventually got me the diagnosis that I needed.”

Growth failure or renal Fanconi syndrome are usually the first noticeable symptoms of nephropathic (infantile) cystinosis. By the age of one, infants generally fall into the third percentile for height and weight.

Haverko fit into that category.

“I was a big baby,” added Haverko. “When I was diagnosed (with cystinosis), I lost a lot of weight so that led to me being severely underweight as an infant.”

“I’m still fairly underweight, as I’m 5’10” and 115 pounds on a lucky day, and no matter how much I eat, it’s still difficult to gain weight.”

Growing up, Haverko’s condition led to its share of challenges and barriers daily. From medicine tubes in his throat or stomach to negative outlooks from doctors, Haverko had the deck stacked against him.

Instead of letting the negatives way him down, he faced the challenges head-on and turned them into positives.

“I had doctors tell me that I wouldn’t even be able to button up my own shirt and that I’d have barriers the whole way,” said Haverko. But, every step of the way, I keep proving them wrong and pushing forward past the barriers.”

“I want to be able to use my life barriers as a platform to speak on the struggles of daily life and how it’s normal to feel tied down or even defeated at times, but it’s always best to look forward in those times.”

Despite his diagnosis and daily battles, Haverko turned to sport. Like most Canadians, hockey was one of his first loves when it came to sport as a kid. He played hockey for eight years and baseball for four years. Volleyball wasn’t on his radar until junior high came along. Admittedly, Haverko didn’t know much about the sport, but he tried out ‘just to see what happens.’

From then on, he was hooked.

“The moment that I stepped on that court, I knew that I was meant to be a volleyball player,” said Haverko.

Haverko’s school had an A team and a B team for Grade Seven. Even without any prior experience in the game under his belt, Haverko made the A team that year. That fueled him to try out for club volleyball, and he would end up playing for the U14 team even though he was still in the U13 age group.

That Grade Seven year kick-started Haverko’s love for volleyball. The love for volleyball ultimately led him to quit both hockey and baseball altogether so he could focus on volleyball.

Even with his newfound love for the game, there was another challenge standing in Haverko’s way.

His height.

But, once again, he quickly found a way to spin that into a positive.

“I’ve always been a short kid,” continued Haverko. “I was the shortest in my grade up until Grade 10 when I started to grow like crazy.”

“I found that volleyball was the sport for me because game sense trumped height, especially at that age.”

Consider those odds, defied.

Haverko progressed from a Left side in Grade Seven to a Left Side / Setter combo in Grade Eight before finally becoming a Libero / Setter. Being a libero and setter allowed Haverko to use his game sense to his advantage.

He credits one of his former coaches as the person who first saw his potential to become a libero.

That person was Jyoti Ruparell, who is currently a libero for the Toronto Metropolitan Bold Women’s Volleyball Program in the OUA.

“To be honest, I fell out of the sport I loved.”

That’s what happened to Haverko during the COVID-19 pandemic, and he certainly isn’t alone in that statement. The pandemic forced many out of the sport they loved, leading to a drastic change in overall routine and lifestyle for student-athletes across North America and the World for almost two years.

The COVID-19 pandemic was the latest challenge in a long lit of obstacles that Haverko had faced throughout his years. Just when he had discovered his love for volleyball and was homed in on a position that he could excel in on the court, the World had other plans.

“Covid was definitely a damper on my career as the Grade Nine club season was cut short, and both the Grade Ten school and club seasons didn’t happen,” said Haverko. “I didn’t play school volleyball in Grade 11, but I tried out for the Ace U18 team and ended up getting cut.”

“From there, I realized how much I missed the sport after the tryout, so I decided it wasn’t the end of the line for me. Instead of giving up, I trained excessively with Young Fitness, and I even began playing volleyball and practicing by myself in the basement … and I became a better volleyball player than I had ever imagined.”

The pandemic forced everyone to get creative with their training regiments when it came to sport, and Haverko was no exception. In his basement, he was using a rebounder for repetitions. He even used his mom’s aerial yoga hammocks as nets to play against himself.

Haverko’s perseverance was on full display yet again, as he came out of the pandemic with a renewed love for the sport and was in a better position on the court than he was previously.

In the next school year, Haverko made his school team as their starting libero, playing under Head Coach Jeremy Davies. Davies is another person that Haverko credits throughout his development as a libero, citing that he learned a ton playing under a national level libero.

Throughout the ups and downs of life and the rollercoaster of emotions when it came to his love for volleyball, playing collegiately was never something that weighed too heavily on Haverko’s mind until his Grade 12 year. It wasn’t until he rediscovered his love for the game out of the pandemic where he thought that playing college volleyball was a possibility.

“Long answer short, college volleyball became a possibility less than a year ago,” said Haverko. “It’s only because I worked insanely hard to become the player that I wanted to be in such a short period of time.”

“It just goes to show you that hard work pays off.”

Admittedly, he took things in stride. But, as time wore on, he started to take matters into his own hands.

It was then that he got connected with Crandall Head Coach Garrett West, and the rest is history, as they say.

“I was determined to play college volleyball, so I started putting myself on the map,” continued Haverko. “I probably emailed every men’s university and college volleyball coach in the country … some answered back, some had interest, and some pushed my name to other coaches.”

“I came across an email from Coach West and he offered me a spot on his roster. So, I started looking into the program and the school while talking to Coach West, and I eventually decided that it was the most beneficial for my career and schooling.”

It was announced on January 18th, 2023 that Haverko had committed to Coach West and the Crandall Men’s Volleyball Program. He will be working towards a Business degree from Crandall University.

The 2023-24 season will mark the debut of the Crandall Men’s Volleyball Program, and Haverko is the fourth name in the inaugural recruiting class for the Chargers. He will line up alongside Brody Smallbrook, Miguel Gionet, and Shane Huggard when the season gets underway in the Fall.

(Photo credit to Crandall Chargers; submitted by Nate Haverko)

“I want people to be aware of the condition and start to get it on the map because the more people we reach, the more possibility there is to find a cure or to get donations to help find a cure.”

Haverko continues to live with cystinosis every day. He takes upwards of 50 medications a day, which he admits can be a lot at times, but he hasn’t let his condition slow him down at all as he’s grown up.

With the odds continually stacked against him, Haverko has found a way to beat them time and time again.

Now, he’s hoping to inspire others with the same condition to keep pushing.

“I want to be a role model for those struggling with my condition,” said Haverko. “The fact that I can inspire younger generations along the way has kept me motivated.”

“I have a TikTok account, a cooking account, with over 95,000 followers so I’ve gained some traction there and have used my platform to share information about cystinosis and help it reach a larger audience. I’ve even had some people comment saying they live with cystinosis and that I inspire them to keep going and stay strong, which really touches close to my heart because that’s my goal.”

From an early age, Haverko has been defying the odds put in front of him. Since his diagnosis when he was just six months, Haverko has faced and overcome his share of challenges and hurdles, many of which would have forced others to succumb to their condition.

Haverko has used his cystinosis diagnosis as motivational fuel for his life. Instead of living in fear of what may happen, he took control of his life and made his own story unfold instead of allowing the doctors and odds write his journey.

Had he listened to the doctors when they said he may not walk or may not be able to button his own shirt, he wouldn’t be on the verge of playing volleyball at the collegiate level. He wouldn’t have become the starting libero this past year at Foothills Composite High School in Okotoks this season. None of this would have been possible had he not continually persevered and showcased his strength.

As he gears up to make the cross-country move to Moncton, Haverko is excited about the new challenges that await him on the East Coast.

“I’m looking forward to competing at the next level while also pursuing a business degree,” added Haverko. “I’m excited to learn from some high-level coaches and be pushed further than I have before.”

“I’m looking forward to building some lifelong friendships at Crandall and just enjoying my last years before having to be a self-sufficient adult. I’m also excited to see what the Maritimes have to offer me because I’m an Albertan, born and raised, so Moncton will be a change of scenery.”

On top of his excitement for this next chapter in his life, Haverko hopes to keep inspiring others with his story while continually pushing to bring more awareness to cystinosis.

“The biggest thing that keeps me fighting is knowing that I’m destined to do great things and inspire others,” concluded Haverko. “I want to be known for my persistence and strength, so I keep pushing and defying the odds that are put against me.”

  • T. Bennett

While there is stem cell research and testing happening, there’s still no cure for cystinosis, a condition that has a life-long impact. For more information on Nephropathic Cystinosis, visit the National Kidney Foundation’s website here.

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