They gave the disease to their children
Jean Numa Goudou ·
This text was on the front page of our first print issue in October 2014. Still relevant today. Sickle cell anemia.
A nod to our archives on In Texto
They share a passionate, unconditional love with a boundless complicity. But Nice and Wilson also carry, in equal measure, something fatal for their children: 50% of the gene for a rare disease.
They are called "healthy carriers" of sickle cell anemia. It is the most common variant of serious hemoglobin diseases, which when it loses its normal shape can cause excruciating pain or increase the risk of all kinds of infections in those affected.
The two deeply in love had no idea, absolutely none whatsoever. It is… their first boy who teaches them this in the most brutal way possible, six months after his birth.
Their first treasure begins developing recurring pneumonia, infections one after another. A race against the clock then begins to heal him, to keep their child alive.
Sickle Cell Anemia
– One in ten Black people carries the gene.
– When both parents are healthy carriers, there is a 25% chance the child will be sick, a 50% chance the child will be a healthy carrier, and a 25% chance the child will be unaffected.
Nice and Wilson lose this battle after four years. But the war is not over for them. When asked whether they could have embarked on having children had they known they were "healthy carriers" of the disease, Wilson Sanon reflects philosophically.
"It's true that forewarned is forearmed," he says, "and you know what they say in medical circles — information is worth more than a prescription," adds "Dr. Courage," as the Quebec press has nicknamed him for his decade-long fight against the disease, despite not being a doctor.
Yet he speaks about it like a true specialist on the subject.
The president of the Association d'anémie falciforme du Québec today invites all young couples considering having children to undergo voluntary screening in order to get a clear picture. Because, "a family with a sick child is a whole family that is sick," adds Nice St-Jean, his wife.
Faith
Despite the loss of their first child and everything they learned about the disease and the risks of bringing another affected child into the world, the Sanon couple tried their luck three more times.
And they realized all three probabilities of blood genetics: their daughter Priscille affected (the 25% bracket), but today cured thanks to a perilous bone marrow transplant… born a healthy carrier (50%)… and born neither a carrier nor sick (25%).
"For us it was not the end of the world," Nice recounts today — this quiet yet determined woman — "we experienced something of a profound spiritual journey as a Christian family."
And beyond her unshakeable faith, Nice acknowledges that she took a chance with God in this game of genetic chance: "When you play the lottery, you never think you're going to lose," she concludes.