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Silène’s Story

The invisibility of this disease is what’s really scary.
I wish you could see my daughter, Marceline, dancing on the table after supper. You’d understand right away why this small, nine-year-old girl rules our house—and hearts—in a big way.

When Marceline was just four years-old, her older brother, Napolean, passed away from complications from cerebral palsy. Sadly, her childhood was filled with more stops at the Children’s Hospital than time spent strutting down her imaginary fashion runway.

You see, when her little brother, Hadrien, was four months old, he was diagnosed with polycystic kidney disease. That’s when we realized that Marceline shared the same set of symptoms. By the time Marceline got her diagnosis, the damage to her kidneys was already done—she was in bad shape.

The invisibility of this disease is what’s really scary. Imagine how it feels—your child looks fine, but you find out that she’s actually very sick.

We have since learned that my husband and I have a mutated gene and when brought together, we made the disease that Marceline shares with her younger brother. It is so mysterious the way genetics work. You can never predict how this disease will affect each member of the family.

Marceline still struggles with the unpleasant medicines and needles, the anxiety of future transplants, and hospital visits, but she is armed and ready for anything with the best family inheritance of all: A passion to create.

I laugh when I see our five-year-old Hadrien put on different superhero costumes—one day he’s Superman, the next it’s Batman and then it’s Spiderman. He puts on the cape and imagines he has special secret powers. It’s typical of how our family uses imagination to bring brightness and strength when things become dark or difficult.
And then there is the other superhero in our house—our oldest son Léopold who is 11 years old. He’s the one who is often overlooked in the scramble to care for his little sister and brother who are so ill.

My husband and I look forward to giving Léopold some special one-on-one attention when his siblings go off to Kidney Camp each summer. We get some quality time together and the peace of mind of knowing there’s a medical team at camp caring for the little ones while we get a tiny break from the daily routine of thinking about medication and injections.

Above all they get to see that other kids have a life despite being ill. And it helps them believe that they can do it too.