Zoé Chalifoux

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Duration: 6 hours 7 minutes. Distance: 546 km.

Those 546 kilometres separate Zoé’s family home in Abitibi from CHU Sainte-Justine in Montréal. Every three to six months, they spend six hours on the road for each appointment, meeting half a dozen different specialists. For Joanie and Jonathan, these trips have become part of everyday life. 

Zoé is born after a long, difficult labour. Then comes the silence. 

No crying. No breathing. 

For 12 minutes, time stands still. 

Twelve minutes while doctors work frantically, machines hum around them, and her parents hold their breath. Twelve minutes that seem to drain all the air from the room. 

Then, finally, a cry. Her first. The most beautiful sound in the world. Joanie collapses with relief. She can breathe again. 

But within Zoé’s first hours of life, another warning sign appears: her blood sugar drops dangerously low. Weighing nine pounds at birth, she is at risk of developing diabetes. It takes several more days in the hospital before mother and baby are stable enough to go home. 

They think they can finally catch their breath. They only think so.

Living with uncertainty 

Something is not quite right. 

Zoé constantly keeps her tongue out and struggles to feed. Joanie’s maternal instinct begins whispering that something is wrong. At first quietly, then more and more insistently. 

When Zoé is hospitalized with bronchiolitis at just five weeks old, Joanie insists that her daughter’s tongue be examined. Doctors listen. They refer Zoé to CHU Sainte-Justine in Montréal for genetic testing. 

Weeks pass. Zoé seems to be doing a little better. Then, at three months old, the diagnosis arrives. BAM. Like a punch to the stomach. A geneticist confirms that Zoé has Beckwith-Wiedemann syndrome, a rare genetic condition that causes excessive growth and increases the risk of tumours affecting the kidneys and liver. 

The words keep coming, but only one remains in Joanie’s mind: tumours. Everything else becomes a blur. 

The symptoms linked to the diagnosis continue to pile up: an enlarged tongue (macroglossia), a difference in leg length and persistent hypoglycemia. "We had to grieve the loss of the healthy child we thought we had. My inner voice kept telling me something was wrong, but I refused to believe it truly," says Joanie. 

A life shaped by medical appointments 

Life changes dramatically for the Chalifoux family. 

Medical follow-ups become constant: kidney and liver ultrasounds in Montréal every three months, speech-language therapy, endocrinology, dysphagia services, occupational therapy, orthopedics, and physiatry. And always those 6 hours and 7 minutes on the road. One way. 

Zoé undergoes four surgeries to correct the significant difference in the length of her legs, including one that reduces the gap from 4.5 centimetres to just 0.5 centimetres. 

At 6 years old, another diagnosis follows: autism spectrum disorder. It helps explain her tendency to avoid eye contact, the difficulty she has expressing her emotions and some of the challenges she faces at school.

Adapting and thriving 

But Zoé adapts. 

She finds ways to play, have fun and enjoy life like any other child. She is a bright young girl with an easy smile and infectious laugh. 

With the support of her teacher and special education technician, Zoé attends a regular school. Over time, and with plenty of encouragement, she becomes increasingly independent. 

The challenges remain, but her appointments in Montréal, far from home, are finally becoming less frequent. Supported by her sister, her greatest ally, and surrounded by the love of her family, there is little that can stand in her way.

Illness has no place in a child’s life. 

– Joanie, Jonathan and Laurence (12)