“Tyson doesn’t have the opportunities that we do. So helping him in any way possible to have these life-defining experiences is so important to me.”
This past June, Stu Cunningham took on the most grueling physical challenges he could find to raise money to send 17-year-old Tyson—who suffers from an incurable disease—to Comic-Con. Over four days, Stu swam 7km in open water, biked 300km, ran 51km, and did CrossFit every hour for eight hours — all to turn Tyson’s lifelong dream into a reality.
Stu first met Tyson seven years ago while working as an instructor at the gym where Tyson’s parents were members. Tyson was 10 years old and had been diagnosed with one of the rarest disorders in the world, Fibrodysplasia Ossificans Progressiva (FOP). FOP is an incurable disorder that causes muscle and joint tissue to turn into bone tissue, rendering the person immobile.
As time progressed, Tyson became more and more caged in his own body. To keep him moving, his parents asked Stu to run weekly sessions of rehab-like exercises.
It was during those workouts that Tyson and Stu formed an inseparable bond.
Over their years of friendship, Stu learned about Tyson’s love of Comic-Con and his dream of attending the event in San Diego, California.
But knowing the costs and medical support required for him to travel overseas, Tyson figured that it would likely never happen.
But Stu wasn’t willing to take no for an answer, so he took matters into his own hands.
Stu started a GoFundMe — affectionately known as Operation Tyson — to raise the $20,000 needed to send Tyson to Comic-Con. To incentivize donations, Stu committed to achieving four days of non-stop intensive exercise: an open-water swim, 300km on a fixed-fan bike, a CrossFit-style workout every hour for eight hours, and a 51km run.
As the donations poured in, Stu started preparing for his challenge. He ramped up his training program and religiously completed five CrossFit sessions, three swims, one run, and two rounds on the assault bike every week for the month leading up to the challenge.
With training under way and donations flowing in, there was just one final hurdle the pair had to face: Tyson getting his hands on a coveted $1,100 ticket. Not to be deterred, Stu rallied the support of friends and family who together sent more than 200 emails to the Comic-Con organisers. A few weeks later, Comic-Con came back with an answer: An anonymous donation had been made for two free passes. Tyson was going to Comic-Con!
Spurred on by the success of the GoFundMe and intent on reaching the fundraising goal, Stu went into the four-day physical challenge with hundreds of supporters cheering him and Tyson on.
Stu approached each day of challenges as if it were the first — insistent that if he felt tired, he wouldn’t show it. The challenges amounted to more than 28 hours of exercise over just four days.
“No matter how long or how hard, no challenge felt impossible to achieve because the end-goal was so important to me and something I so fiercely desired to achieve for Tyson,” says Stu. “To see the happiness and emotion from Tyson and his family was worth all of it.”
“I’ve learned that you can achieve just about anything.”
Stu’s physical feat drew in the final donations needed to hit the target, and the GoFundMe raised $24,235 of its $20,000 goal.
In July, Tyson embarked on the trip of a lifetime to meet his comic book idols, Thanos and Deadpool, because in his words — just like him — “they both sit in a chair at some point…!” The funds raised were enough to allow Tyson’s whole family to accompany him as well as Stu, who attended the convention as Tyson’s chaperone.
Operation Send Tyson to Comic-con! is still raising funds, which are now being directed towards FOP Australia. The registered charity aims to raise awareness of FOP, provide a support network for families and individuals with the condition, and facilitate further research towards treatment and a cure.
FOP affects 1 in every 2 million people, and there are just 15 diagnosed cases in Australia. FOP Australia receives no government funding and relies heavily on donations.