Life is Precious: Chaix Skates for a Cause
Ice Bears’ winger to rollerblade across the country for charity
By Steve Casson
Photo Courtesy of MichaelCignoli.com
Louis Chaix was dying. Three weeks after the 6-year-old came home from school with redness,
flu-like symptoms and a fever; doctors were still trying to understand what was causing Chaix’s
body to destroy itself.
The night before he was hospitalized, Chaix said he started itching and couldn’t stop. With each
passing minute his skin was turning bright red. Chaix said his parents were so alarmed they took
him to the emergency room.
“Doctors couldn’t tell what was going on,” Chaix said. “I was undergoing surgeries and all sorts
of treatments that were not doing anything because nobody knew what this was.”
That’s when Chaix was airlifted to a burn unit in Paris where he was diagnosed with toxic
epidermal necrolysis, an extremely rare skin condition in the same family as Stevens-Johnson
syndrome, which causes skin to blister internally as well as externally.
“I was burned to the second degree on over 80% my body surface. Meanwhile, my organs, my
lungs — everything was burning,” Chaix said. “I was basically burning from the inside out.”
It was the night after he was diagnosed with TEN when Chaix overheard a conversation between
the medical staff and his parents. It’s something that Chaix said he will never forget.
“The doctor walked in my room one day. I was awake, but I had my eyes closed. My mom was
there and he said ‘hey ma’am, if he’s not doing better by tonight, he’ll be dead tomorrow
morning,’” Chaix said. “My mom started crying. I opened my eyes and said ‘mom it’s all good. I
got it…and one day I’ll play hockey in the U.S.”
Now that he’s on the ice at Missouri State, the senior Ice Bears’ forward wants to use his
disorder to make a difference. After settling into life in Springfield, Chaix said he was ‘in a
really good place mentally’. He pondered how he can give back to the community but also give
hope to many TEN patients, families and everyone who has been affected by it.
“Well, I can’t skate across America but I can rollerblade. So my goal is to rollerblade from Los
Angeles to New York City to bring awareness and raise funds for research for this condition,”
He is partnering with Vanderbilt University to direct collected funds to its research center,
working with a friend who studies film and media at Missouri State, and a movie production
company to record his journey across America after he graduates. Chaix and crew release videos
on his Instagram page @louischaix and under the hashtag @10forTEN.
Specialists knew so little about the disease at the time they never found out what caused his
issues. Chaix said his testing was done too late. Medical websites say in most cases it usually
starts from an allergic reaction to medication.
Then as quickly as TEN appeared, it went away. Chaix says there is no explanation how or why,
but one day he started feeling better.
“I’m very lucky that I don’t have any side effects from it. Some people who beat the disease often
have side effects such as flare-ups, or sometimes you lose a limb because of infection,” he said.
“Or, they’re blind or have problems on the inside of their mouth.”
Chaix said doctors told him at the time he was supposed to be blind. He couldn’t go in the sun for
three years, he said.
“I have a very sensitive skin to the Sun,” Chaix said. “The only things I have left from it are
scars on my face and couple on my legs, but nothing serious.”
While more research is needed, Chaix says he doesn’t know if TEN will come back or not.
“It’s one of those things where it’s in the back of your head all the time, but at the same time I
realize that I’m fortunate to be living and doing what I love the most,” Chaix said. “I try to live
my life as much as I can. Life is precious.”