Léa-Marie is just 12 years old and she already has her own condo: “A corner unit with large windows, a super comfortable bed and Wi-Fi,” she explains with a sly smile as she gets into her bed on the 7th floor of the Children’s. Léa-Marie has a rare and serious disease that, for the last year and a half, has forced her to call the Children’s her second home.
It all started in November 2015, when her greenish complexion and a lack of energy led her parents to bring her to the Children’s. Léa-Marie’s mother Sophie remembers comforting her by saying: “You’re going through a stressful time, with your high school entrance exams and cross-country ski competitions coming up.” They never expected she would be diagnosed with aplastic anemia, a disease that prevents the body from producing red blood cells.+
Léa-Marie began her treatment at the hematology clinic three to four times a week, but after a few months, her condition hadn’t improved. She needs a bone marrow transplant, and her immune system has to be destroyed for the transplant to succeed. She can’t walk for more than a few minutes at a time, and the medications have swollen her face to the point that the pre-teen doesn’t recognize herself.
ON TOP OF BEING ISOLATED FROM HER FRIENDS, LÉA-MARIE HAS DEVELOPED NEW FEARS. SHE CAN’T FALL ASLEEP IF SHE’S ALONE. “I AM SO GRATEFUL TO MY LITTLE SISTER FOR SPENDING SO MANY NIGHTS WITH ME,” SHE SAYS, FIGHTING BACK TEARS.
When discussing what’s toughest about her disease, Léa-Marie explains: “It’s not the needles! You never really get used to them but it’s part of the routine. The hardest part is not being able to go to school. I was so sad when they told me I couldn’t go. To me, it meant I couldn’t live a normal life anymore.”