“When life gives you lemons, turn them into lemonade,” a popular saying goes. And if life sends us a giant apple, what do we do? We eat it one bite at a time, replies the author Édith Lacroix in her first children’s book, which she has self-published.
Lemons or apples, we understand that fruits are only an image. They represent an obstacle that we face: divorce, moving, loss of a loved one … For Édith Lacroix, this ordeal is the degenerative disease of her son, hence the disproportionate size of the fruit in her book. Filipou and the GIANT apple.
Félix-Antoine is 8 years old. Yet he has the motor and cognitive skills of a two-and-a-half-year-old toddler. He has already known how to make puzzles, play cards, count to 15 or even name colors. However, the more the years pass, the more his aptitudes disappear.
“Today, when I take out the cards, he looks at the pictures or he eats them. He no longer knows his colors. When I give him crayons to color in, he will put them in his mouth or he smears on his paper. He really lost a lot of skills. It is on the decline, ”describes Édith Lacroix, a tremolo in her voice.
PHOTO ROBERT SKINNER, THE PRESS
Edith Lacroix
Watching your child lose his hard-earned skills is difficult.
Édith Lacroix, author and mother of Félix-Antoine
The boy has Hunter syndrome, a rare disease that affects 2,000 to 3,000 people worldwide, including around 40 in Canada. Life expectancy ? Adolescence.
The disease, also called mucopolysaccharidosis type II (MPS II), is characterized by the absence of a valuable enzyme. “Because he lacks this enzyme, his organs accumulate waste. They accumulate them since birth. At some point, the organs no longer function well, ”explains the author.
Félix-Antoine has undergone various surgeries to remove accumulations of waste from around various organs, but it always has to be done again.
Each week, the boy receives a replacement synthetic enzyme. “At least it helps a little to slow the progression of the disease, but never as much as if it had its own enzyme in its body”, indicates Édith Lacroix.
Seeing his son live with such a sword of Damocles hanging over his head is nerve-racking. “Coldly, I know where the disease is going to lead. […] Thinking about it pains me too much. I will live it when I get there, ”says the mother.
Hope
“Since we were diagnosed [lorsque Félix-Antoine avait 2 ans], something that keeps me alive […], it is the researchers, she continues. For children today there is a lot, a lot, a lot of hope. ”
It is moreover this luminous message that Édith Lacroix wanted to put forward in her album that she describes as a tale. “It’s a story of courage and perseverance. With the love of his parents, the little explorer will continue his journey. There is a lot of hope and light in this book, ”says the one who has had a passion for writing since childhood.
“I started writing to try and think of something else. Even if it was about my son, it did me good to invent a story around him to escape […]. I think that was kind of my lifeline. ”
Édith Lacroix has chosen self-publishing in order to donate 100% of sales revenue from Filipou and the GIANT apple to the Isaac Foundation to fund research into Hunter syndrome. So far, she has raised $ 10,000 through the sale of her book, available in French and English, notably on her website.
In the fall, she will release The rare little bird at Quebec America. His source of inspiration for this second youth album? Her son, once again.
Filipou and the GIANT apple
Text by Édith Lacroix
Illustrations by Émilie Leduc
From 5 years old