From The Standard
By Stephen Terrill
Louis Chaix was dying at just six years old. After a “tortuous” stay in a hospital in western France, his body was literally burning up.
“My body was affected up to at least 80% and I was burned to the second degree,” Chaix said. “I had no more skin in my lungs, my organs, the inside of my mouth — everything was burning.”
Chaix was suffering from Toxic Epidermal Necrolysis, rare skin disorder that Johns Hopkins Medicine says “causes the skin to peel in sheets. This leaves large, raw areas exposed. The loss of skin allows fluids and salts to ooze from the raw, damaged areas. These areas can easily become infected.” It is related to Stephens-Johnsons syndrome, but TEN is more severe.
Along with a mortality rate of over 30%, one of the scariest parts of TEN is trying to determine the cause. Often it is a severe allergic reaction to medication or something that came in contact with the skin. In Louis’ case, the doctors did not know. The condition also cannot be treated with medication because this could further irritate the skin.
“They didn’t know (it was TEN) in the first hospital,” Chaix said. “They were torturing me every day with medication and then they were like, ‘Hey, we’re going to airlift you to the burn unit in Paris.’ So they put me on a helicopter and didn’t even tell my parents — my mom could barely jump in there and come with me.”
The doctors in Paris quickly diagnosed Louis with TEN and began a pain management treatment while waiting to see if the disorder would progress. The only thing he and his family could do was wait.
All of this brought Chaix’s hopes of playing hockey to a screeching halt. He had been playing since he was four and had fallen in love with the game. While his teammates were dreaming of professional careers and scoring highlight reel goals, he was grappling with the idea of death.
“I was still doing really, really bad at that time,” Chaix said. “One day the doctor walked in my room and he thought I was asleep, but I was just resting with my eyes closed. He told my mom ‘Ma’am, if he’s not doing better by tonight he’ll be dead in the morning, have a good night.’ And he walked out. I’m laying there at six years old — you know what death is, but you don’t know what it means.”
His mom broke down in tears right after. Chaix, with all of the confidence of a six-year old, told his mom he was going to be okay. He couldn’t imagine this being it for him.
And shortly after that exchange, a beacon of hope came into the room in the form of a stick and a hockey bag.
“In the hospital in Paris, my dad brought me my very first hockey equipment,” Chaix said. “In my family’s mind and my mind, I was going to make it. There’s only one hockey store in France, and it was in Paris. He walks in and he’s like, ‘Hey, this is your hockey bag, your stick, this is for you when you get out.’ That was a turning point for the outcome of this disease for me. I was able to project myself and promise myself that if I was able to make it through, I was going to play hockey.”
Chaix went on to make as full of a recovery as one can make after having 80% of their skin burn up. It took a long stay in Paris, but he got to follow up on his promise. At 14, he came to North America and played two years at the high school level in Quebec City, Quebec.
“It was crazy — I was a minor, trying to go without my parents,” Chaix said. “I have to find a host family to live at, a school and a hockey team. The paperwork took a year.”
One night at the dinner table, his mother handed him his visa, and he was off to Canada.
After his time in Quebec City, he played junior hockey in Toronto, then El Paso, Texas, where he played with current and former Ice Bears Alex Rubin, Jake Kopinski, Simon Hobbis and Hunter Cooley. He then spent two years at the NCAA D3 level at Anna Maria College near Boston, Massachusetts, but he decided to transfer after finding the program did not fit him. By chance, a friendly phone call with Rubin led to him getting in contact with Ice Bears head coach Jeremy Law, and he was offered a spot on the team shortly after.
He got back into the United States and moved as many of his things as he could from Massachusetts to Springfield right before the 2020-21 school year.
Now, he is about to finish up his senior season at Missouri State, playing at the club level for the Ice Bears in the American Collegiate Hockey Association. He’s a physical player who is not afraid to make hits on the ice. He will be a part of the roster that takes on the defending national champions, Adrian College, in the national tournament on March 12.
He has fit right in at MSU after transferring shortly before his junior year. Chaix seems to make friends wherever he goes, and Springfield has been a good place to do that.
“He’s been great,” Law said. “Just a great character guy in the locker room. He does a lot of good things in the community, and he is definitely one of the fan-favorites. He’s just got an awesome personality. His past speaks volumes of him and his ability to deal with adversity. I love what he’s doing now to bring awareness and to do it through hockey.”
Despite being able to play college hockey, he still has to be careful about things. Since he does not know what caused his case of TEN, he is extremely cautious of taking medication or skin treatments. The only thing he is comfortable with is Tylenol. He also cannot spend too much time in direct sunlight since he burns easily. He lost a lot of protective layers of skin, so even if he puts on SPF 100 sunscreen constantly he will still burn.
Still, compared to many other survivors of TEN, he has an unimaginable amount of freedom. He was told as he was still in the hospital he would likely go blind — which did not happen. But recovering this well has not been the easiest thing for Chaix to deal with.
“I felt some survivor’s guilt,” Chaix. “I didn’t steal anything from anyone — I fought very hard to make it through this disease and to make it to where I am today. But how is it that I get to live my life and chase my dreams and play hockey and be healthy when other survivors suffer more or don’t make it at all? I was told I was going to be blind. I just couldn’t sit there and do nothing about it.”
These feelings brought out an intense desire to help other people suffering from the disease as well as try to connect people together emotionally. He has been involved with some charities in the past, including the Campus Princess Program at Anna Maria, where he would dress up as a superhero and visit patients at the Boston Children’s Hospital.
But the unique environment of Springfield and the Ice Bears allowed him to find a way to work out those feelings of survivors guilt.
Shortly after transferring to MSU, Chaix was given a spare set of rollerblades by former Ice Bears’ winger Alex Rubin to skate around campus with Rubin and a few other players.
“I felt like I was in the Mighty Ducks, and I fell in love with it,” Chaix said.
He kept doing it and mentioned to his roommate, fellow Ice Bears forward Garrett Wojicki, how it would be crazy to rollerblade across America. The idea stuck with him, but he needed to have a reason to do it.
“Then I realized, I had this really rare skin disease when I was young — I can do this to get involved and spread awareness,” Chaix said. “I think it’s a great way for me to turn the page once and for all on this.”
He then crafted the idea of 10forTen, a cross country rollerblading journey to both raise awareness and funds for TEN research.
This summer, within the first two weeks of June, he is going to rollerblade across the country. He’ll start at Venice Beach Skate Park in Los Angeles and end at Times Square in New York City. His route will go from Los Angeles to Las Vegas, to the Grand Canyon, Albuquerque, Oklahoma City, Springfield, St. Louis, Indianapolis, Columbus, Pittsburgh then NYC. The exact route is still being mapped out, but Google Maps has a similar path being just under 2,800 miles. He hopes to complete the journey in around 60 days, although that is not a hard time window. He’s training a lot in order to be prepared for whatever is thrown at him.
“I’m a competitor, and I really want to get it done and have a good athletic performance,” Chaix said. “But I sit there and I think about why I am doing this, and I don’t really want the cause to be pushed to the side because I’m trying to get it done in a certain window.”
Chaix is partnered with Vanderbilt University Medical Center for the trip. He is also partnering with K-Factor films, a production company from Los Angeles, that will document the journey and potentially make a feature film on his story.
This distance feels like a monumental task, but something Chaix has figured out in his life is people can do a lot more than they think.
“I also want to show people that when you want to accomplish something — first of all you’ve got to get started,” Chaix said. “You’ve got to bet on yourself. Once you get started, even if it’s just one step, you keep moving forward. Sometimes people tell me, ‘I wish I could do something like that.’ The cool thing is that you can.”
Chaix said this whole journey will help him move forward with his life while translating the pain he felt, both physically and mentally, from TEN. What caught him by surprise, however, is the inspiration he has already provided to people.
“This past summer I was invited to the worldwide annual conference for TEN to talk about my project and my life,” Chaix said. “This lady came up to me and said, ‘You inspire me.’ I was confused at first, but then she said, ‘You’re a college athlete, and you’re going to rollerblade across the U.S. I can barely put my shoes on and walk because my skin falls off. But when I see you doing these things — it gives me hope that one day I’ll be able to put on my shoes and go run again.’”
Through everything Chaix has done, he’s kept an overarching philosophy of making sure people know their experiences are valid. He frequently tells people that even though they may not have had 80% of their skin burn at a young age, that does not discount their feelings.
“I tell people, ‘I bet you have been through things I haven’t,’” Chaix said. “And those things are just as hard — in different ways. People don’t give enough credit to themselves. They’ve done all these things, and they can handle what comes next.”
If you want to donate to Chaix’s project, the link, along with more information, can be found at https://give.vanderbilthealth.org/campaign10forten/c359866. He posts updates of both the project and his hockey career on his Instagram and Facebook, @louischaix and Louis Chaix.
(Originally published at https://www.the-standard.org/sports/missouri-state-ice-bear-louis-chaixs-skin-nearly-burned-him-to-death-now-hes-trying/article_dae1b6a8-9a3d-11ec-b632-03c281a896f5.html)