WHAT I REALLY MISS IS PLAYING WITH MY DOG. THAT’S THE FIRST THING I’M GOING TO DO WHEN I GET HOME.
Jean-Christophe is terrified of operations. Which doesn’t seem terribly surprising when you find out he spent the second hour of his life in the OR to undergo a gastrostomy for esophageal atresia. Welcome to the world, little prince!
His godmother Hélène starting calling him a prince early on, in part because of his bravery and determination, but also because of the gold star stuck on his metal “crown” – the one bolted to his head and connected to a pulley system by a metal wire to straighten his scoliosis-ridden spine.
Today, at age 16, in a room plastered with pictures of his family and his dog, Tobi, he sits on his metal throne and eats his “tortellini soup” as he awaits his next surgery.
You see, Jean-Christophe can’t chew. His esophagus is very short and doesn’t contract the way it needs to to digest food. Which means everything he eats has to be puréed first. Even his Aunt Jojo’s tortellini. Even the pizza he loves so much. Even T-bone steaks. “Without the bones, of course!”
Sitting on his bed is a ragtag collection of stuffed animals. A scruffy, sad-looking teddy bear stands out from the lot. He’s clearly been through a thing or two. “Almost as much as I have. A doctor at Sainte-Justine gave him to me when I was just small. I used to say he was allergic to the sun.”
Allergic to operations too, maybe?
“Before they wheel me in, I always panic. This time, I grabbed on to my father’s arm to keep him from leaving. I was freaking out. Then we got to the place where he couldn’t go any farther. I’ve always hated that point of no return. And then my dad was gone…”
Three days after part of his spine was stabilized with two metal rods and several of his vertebrae were fused, Jean-Christophe was up and walking… free for the first time in weeks. “It was weird. I didn’t have any weight to carry around anymore. So it was all worth it in the end…”
Jean-Christophe might have relinquished his throne and his crown, but he’s still very much a prince, surveying his realm, with his family, friends and his trusty steed Tobi by his side.
TOGETHER, WE WILL
“Because you give to the CHU Sainte-Justine Foundation, our multidisciplinary team of researchers is one step away from devising even more revolutionary treatments for scoliosis and developing new approaches that are less painful, less invasive and more personalized, which will eventually lead the way to preventing and correcting the condition without surgery.”
- Stefan Parent, orthopedic surgeon, researcher and Jean-Christophe’s doctor