Teen Partners With Soccer Star to Design Shirt Just in Time for Rare Disease Day
An opening in Evan’s own words:
“My name is Evan, and I’m now a junior in high school.
I grew up playing soccer and dreamed of going pro one day. An unexpected pre-season injury when I was 9 years old (8 years ago) started a new path for me. It was a very severe injury that took multiple surgeries and relearning to walk before I was able to play again. Unfortunately, the injury brought out multiple genetic diseases my family had no idea I had or were in our family.
I continued to play soccer with support from my family and my “found in life” family, mainly my big brother Brian, who helped me find my way back to playing after every setback. Brian has been my mentor, my support and honestly, he is my biggest inspiration.
Two years ago, I was told I could no longer play the game due to a heart condition. I’ve spent the last few years in and out of the hospital battling multiple medical conditions, and I had many major surgeries. At a young age, I had already decided to dedicate my life to giving back, and I made it a goal to live a life that makes a difference.
I may be sick, but I still do my best everyday to help anyone I can.
I’m Evan. I’m a Christian, a soccer player, a writer, an avid reader and so much more. I try to live each day making a difference in a positive way. I have severe Crohn’s disease and seven other rare diseases, but I won’t let that change my life plans.” — Evan Mundine, age 17.
How It Began
Early in 2015, I received a direct message on my company Twitter account from a Twitter account named @Bilzy. Little did I know the impact the person on the other end would eventually have on my life. He told me he had Crohn’s disease, a disease that another athlete I worked with named Jake Diekman was helping raise awareness for at the time. Evan’s initial direct message reaching out was simply to thank my company, Athletes Brand, and Jake for raising awareness for those suffering from Crohn’s.
Over the next few days of conversation via Twitter DMs, Evan eventually asked if it was possible that he did his own shirt to help raise awareness for rare diseases. At the time, he suffered from five rare diseases — and I had no idea what a rare disease was. He went into detail on the surgeries he recently went through, having to give up his biggest passion, soccer, and more. It was incredibly heartbreaking, and so inspiring at the same time to hear he still wanted to use his energy to help people — not to raise money for himself, but for others.
It’s written in our company policy at Athletes Brand that for us to do a shirt for a cause, we have to stick to our business model of the shirt being designed with a pro athlete. If we don’t, then it opens the door to having to say yes to everyone who wants to do a shirt for a charity they’re passionate about. But unfortunately, our model for the charity shirts doesn’t work unless the charity, my company and the third party all have a big power of influence, which would be a major let down for those without a big social media following. Our platform works and is built for athletes to take advantage of their unique power of influence to make the world better; it’s not built in a way to work for anybody.
Initially, I simply explained that to Evan, even though it’s the toughest thing in the world to do — to tell a kid he can’t do something when his intentions are to help others. He replied understanding and thanked my company again for what we had been doing for Crohn’s disease. Over the next few days, Evan stayed in touch. He retweeted all of our posts about baseball player Jake Diekman’s cause for the Crohn’s & Colitis Foundation of America (CCFA). Then, he brought up the idea about doing a shirt and having one of his soccer friends help. It was a brilliant idea if we could find the right athlete — but that took Evan all of 48 hours to lock in. He instantly started throwing out big names in U.S. soccer that he’s friends with, asking if they would work. I said yes to all of them. Then the first person he reached out to was on board. Alexi Lalas, a National Soccer Hall of Fame inductee and the most colorful soccer analyst on American television.
“Evan has been a friend and member of the soccer community for many years. He’s a young man who, despite facing many difficulties, has retained a wonderful passion for life and for the game he loves. Like soccer, Evan brings people together, and I’m honored to partner with him and AB for this campaign. Together, we can raise awareness, understanding and money for a worthy cause that can help Evan and others better cope with the health-related issues in their lives,” said Alexi.
The Desire to Make a Difference
Evan’s reason for why he wanted to do the shirt as soon as possible is what showed his true strength and purpose the most.
“I’d like to know, in case my next surgeries don’t go my way, that I left something behind to help other kids have a better chance at life,” Evan said.
Evan had become accustomed to life-threatening surgeries. They’d become a part of life to him. Over the past year, we’d had 24- to 48-hour lapses in conversation due to brain stem or intestinal surgery, and the list goes on. Over the next couple of months since deciding to do the shirt with him and Alexi, I got to know Evan a little better. Still through Twitter DMs, but I kept up with his progress. He was in a situation where he said there is no cure for him. There is no getting better. There is only hope to help others cope, and to one day help others get better. The way he communicated and the things he said were captivating. They were motivating. They made me rethink every issue I ever have each day. Somebody with that trait to impact others in such a way is truly a rare breed.
As the design process had been coming to an end, in casual conversation Evan told me he had his “first heart attack” a few days ago.
“It was mild, but it sure hurt bad. It happened last Thursday. Today was all about hemorrhaging and waiting to learn if I needed a transfusion. I’m good for now,” said Evan.
His first heart attack. As if it was no big deal. He’s 17 years old, and he brushed off a heart attack as if it’s just a normal hurdle in life to overcome.
And then December hit.
At this time, we’d just faced rejection from a U.S. charity that helps families of those dealing with rare diseases. The charity had helped Evan’s family in the past with some things and was Evan’s first choice. This was the first time in my company’s history that a charity had ever said no to us doing a cause campaign for them.
The cause campaigns that Athletes Brand does are two-week awareness campaigns where a professional athlete designs a shirt, the proceeds go to the cause chosen by the athlete, and we try to help get the cause in front of 20 million people in two weeks through professional athletes and their social media among other media outlets. Basically they get tens of thousands of dollars in free advertising, plus a large chunk of the sales, and they don’t have to invest a dime, a charity saying no is actually something I’d never even considered a possibility.
The charity knew Alexi Lalas was the athlete behind it, and they knew Evan’s story and why we were doing this, so it was shocking. Evan was shocked, too. And the rejection couldn’t have come at a worse time. Evan was about to go into a surgery that he had to travel from Texas to New York for, as he was losing a couple pounds each day. I’ve never heard Evan say he’s not doing well. For him to say that, he must be doing incredibly poorly in my opinion. We had the shirt done. We had the pieces of the puzzle in place, with the athlete and people on board to help get the word out. But without reason, the charity told us they’d like to pass on the opportunity. I was discouraged, but Evan wasn’t.
One month later, I finally heard back from Evan. It was the longest communication gap we’d had to my memory, and he wasn’t active on his social media for awhile. Evan let me know he was home and that his surgery was a tough one. He seemed more urgent than normal to do the shirt. I could hear the importance to him of getting this shirt for a cause campaign launched. He so badly wanted to make sure he didn’t succumb to cancer or to a surgery before leaving some sort of legacy, some sort of national or global impact on people’s lives. This was more than just a shirt being sold to raise some money and awareness for a cause. This was a person wanting to truly make the world a better place. Evan’s passion to make the world better was more alive than ever in my eyes. He was sick. He spent Christmas in the hospital. He had even more surgeries coming up after that big one — intestinal and a heart surgery. He simply told me he’s “still trusting God.”
The Final Piece to the Puzzle
A couple of weeks later, I found a charity that works with rare diseases that was ecstatic to partner with Evan and Alexi on this awareness campaign, EURORDIS. They’re a European charity that helps families of those dealing with rare diseases. It just so happens they’re also the ones in charge of Rare Disease Day, the global awareness initiative for rare disease that is on February 29 this year. This was the perfect platform to get Evan into for him to make that global difference he wanted to make — and for him to share his story that I truly believe needs to be shared. When I told Evan we might have a charity to work with, his response was incredible:
“So it’s going to happen? That’s great! I needed good news. This cancer stuff is making life scary,” said Evan.
Evan told me he’ll get pictures of himself in the shirt for Athletes Brand to share during the campaign and that knowing the campaign is happening makes him feel better. He said he’s a “rare 7,” and he wants to see cures start happening. I responded saying, “I want to see it, too, man. I want to see you better!”
And his response, once again, impacted me in a big way.
“There won’t be a better for me, but we can help other kids have a real shot at life. That’s good enough for me,” said Evan.
That response wasn’t something a 17-year-old would normally say. The kid wasn’t a kid. He may have been 17 years old, but the kid was a man. He was more of a man than most men I’ve ever met. He understood purpose in life. He understood the value of leaving a lasting impact on the world. To me, that’s what a real man or woman is. To me, that’s maturity, and that’s understanding of life. He was 17 years old, and he understood life.
Today when I write this post, it’s February 23, 2016, day one of Evan’s 14-day campaign for Rare Disease Day awareness, almost a year after first meeting Evan through Twitter DMs. The shirt is live at AthletesBrand.com/Alexi, and people are talking. Evan’s story is beginning to be shared after a year of trial and tribulation in Evan’s life, and bumps and hurdles in the process of doing this shirt for charity with him.
This isn’t a campaign about sales. It’s a campaign about two things: awareness for rare diseases and sharing the story of one of the strongest, most inspirational people on this planet. It’s a story that will instill hope in others facing similar life-threatening issues. A story that will instill strength and determination in those in need. A story that’s still being written.
Evan gives me strength to overcome my own daily struggles, knowing that mine don’t compare to what his are, and yet his attitude still stays positive. His mind still works with purpose. He sets the tone for how to live life selflessly. Evan is a rare breed — a rare breed that we need more of.
Thank you for sharing your story, Evan. Thank you for being selfless. Thank you for being rare.
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