The Misere Family
A newborn baby is virtually guaranteed to turn any household upside down, but learning that your child has sickle cell anemia when she’s only two weeks old is another level of upheaval altogether. That’s exactly what happened to Marie and Carl Misere and their daughter Laila.
“You start building your life around your child,” says Marie. “For example, getting a cold isn’t a big deal for most kids, but for Laila, it could mean so much more. My heart drops a little whenever she starts getting sick, and we all go on high alert.”
There’s no denying that this tight-knit family’s ordinary life has been forever changed by Laila’s diagnosis. In fact, Marie says she has lost count of how many times her daughter has been admitted to the hospital. Despite the disruptions, the Miseres try to keep things as normal as possible.
Marie explains, “C.U.R.E. events gave us a chance to get away from the hospital for a little bit, and to meet people who are going through similar experiences or who have been in the same shoes.”
In addition to Laila, the Miseres have three young sons. The Parent Advocate program helped Carl and Marie keep perspective and prevent Laila’s disorder from taking too great a toll on them.
“You don’t realize how much a blood disorder affects the whole family,” Marie says. “But for our advocate, it wasn’t just about Laila. She always wanted to make sure our boys were OK, too.
“She was a smiling face that greeted all of us every time we went to the hospital.”