Evan is a Teen with EDS who “Lives Each day Making a Difference”.
This courageous young man wants to help others with rare and debilitating diseases like his.
By Wesley Gardner.
“Sitting on the floor of his living room, with family photographs checkering the light yellow walls and Manchester United v. Bayern Munich playing on a muted television behind him, 15-year-old Evan Mundine began to tell his story.
He talked about his passion for the game of soccer, and how he’s formed a brotherhood with some of the nation’s top players. He talked about the joy he felt in helping others, knowing he can make a difference. But mostly, he talked about his battle with a series of rare and debilitating diseases, and how they haven’t stopped him from seeing the beauty in life.
“I once dreamed of playing pro and representing my country,” said Evan, who has spent more than 40 hours in the operating room since 2007. “Now, I just try to make it through each day knowing I somehow made a difference in someone’s life.”
Doctors wouldn’t realize until 2013 that Evan had been born with Ehlers-Danlos syndrome (EDS), a rare genetic mutation that diminishes the body’s ability to produce collagen, a vital contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs. The disorder eventually stemmed into a slew of other rare conditions that would threaten his ability to play the game he loved.
A love of the game
Even as a youngster, Evan stood out in terms of skill and knowledge on the soccer pitch. His mother, Frieda, had been coaching youth soccer even before he was born. It’s in his blood.
Proving his talent on the field, Evan was eventually recruited in 2007 to join the first round of Dynamo Centers of Excellence, a premier training site that houses some the state’s top talent.
His admiration for the players was a central source for his motivation. Following a chance meeting with former FC Dallas defender Clarence Goodson while attending his first professional game, Evan, then six, began to write letters to his favorite players, reaching out to the men he drew inspiration from.
They wrote back.
Evan’s initial inquiries have since spawned into lasting friendships spanning across Major League Soccer. He’s become well known throughout the league, regularly talking with Goodson and Dynamo standouts Brian Ching and Giles Barnes, among others.
“He’s an incredible person,” said former MLS and current Professional Arena Soccer League midfielder Brian Farber, who considers Evan a little brother. “He would break down plays to me after the game, and I would think ‘wow, he’s right.’ If he didn’t have his injury, he could have become a professional.”
It started with a broken leg.
After taking an aggressive, though accidental, slide tackle in 2007 from not one, but two, defenders while training, Evan suffered a spiral compound fracture to his left tibia. The injury left him unable to walk for nearly a year and signalled the emergence of a battle Evan is still fighting today.
“It just wouldn’t heal,” said Frieda. “He hadn’t been diagnosed with EDS at that point, so we didn’t understand why.”
The injury also marked the beginning of more severe complications.
“I started to notice my stomach issues were getting a lot worse,” he said. “We thought it was because I’d been stuck in the wheelchair for so long and wasn’t able to move around much.”
Evan’s leg eventually healed and he was on his feet again, but the pain in his stomach remained. Doctors initially chalked up the bouts with nausea and cramping to anxiety. He had missed out on soccer for a year, they reasoned, and was nervous to return to game after suffering such a gruesome injury.
He was prescribed anxiety medication for a year, to no avail. The following three years were spent testing various dietary regimens. Sometimes, he would enjoy weeks of minimal discomfort. Others, he would struggle to get out of bed for days on end.
On a summer afternoon in 2012, Evan was experiencing an unusual amount of pain. He approached his mother, felt something pop, and collapsed.
“That was the first time he had hemorrhaged,” said Frieda.
Following a colonoscopy, Evan was diagnosed with Crohn’s disease on June 1, 2012. He would spend the rest of the year in and out of the hospital. He cycled through medications and treatment plans on an almost month-to-month basis. He would see stints of improvement, followed by complications in other parts of his body.
After learning that he was suffering from Chiari malformation, which affects the inflow and outflow of blood to the brain, Evan underwent brain surgery in Feb. 2014 to decompress his spine. Immediately following the procedure, his blood flow increased by 15 percent.
“I just remember touching his hands and his feet and starting to cry because they were actually warm again,” Frieda said, as a tear rolled down her cheek. “For years, the doctors would tell me I was imagining things, that it was all in his head.”
Evan’s medical bills have left his family more than $100,000 in debt. Prior to the Affordable Care Act, Crohn’s disease was listed as a pre-existing condition, so he didn’t receive coverage. But he could have been. After racking up nearly $80,000 in debt, Frieda found out that Evan was eligible for a federal pre-existing condition plan the entire time.
“We were at so many different hospitals, speaking to different doctors and social workers,” she said. “Nobody told us.”
Evan is now facing another potential surgery that would insert a permanent feeding tube, though his positivity remains unyielding.
“I can sit around and mope all day, which won’t make me feel any better, or I can go out and do something about it,” he said.
Making a difference
In case you hadn’t noticed, Evan isn’t your typical 15-year-old.
His bedroom bookshelf isn’t lined with comic books or young adult adventures. Instead, it’s filled with dense, demanding novels and philosophical texts. He’s currently finishing up Fyodor Dostoyevsky’s “Crime and Punishment,” because, as he happily noted, he enjoys Russian literature.
Evan has a natural propensity for assisting those in need. As a four-year-old, after taking home an “I can help” jar he’d received at a local church gathering, he filled it with the entirety of his piggy bank — a whopping $80, which could have netted him at least three video games — and took it back to the church.
“I remember hearing the ‘clink clink’ of the coins hitting the glass, and I explained to him that once he gave the money away, it was gone,” said Frieda with a laugh. “I’ll always remember him looking up and saying, ‘I know, mom. I know. I can help.’”
Early birthdays growing up didn’t feature over-the-top parties with clowns and heaps of presents. At his insistence, his family would instead volunteer at local food banks or soup kitchens. He’s already spent more time than most adults raising funds for various foundations, including the Leukemia & Lymphoma Society and the American Heart Association.
Now that he’s personally dealt with Crohn’s, he’s begun finding ways to raise awareness about the rare disease.”
“I guess I just try to help whoever I can,” he said. “I make it my goal to live each day making a difference.”
Evan is a remarkable young man making the best of a very difficult situation with Ehlers-Danlos Syndrome.
We appreciate your Comments and Likes