"Thanks to equipment funded by Enfant Soleil, our son is still alive today. Since his birth, we’ve donated every year. We’ve seen firsthand just how important that support is." — Stéphanie and Luc, Frédéric’s parents
Always ready to help
Frédéric likes to feel useful. Whether at school or at home, he is always looking for ways to help, such as clearing snow off the car, getting someone a snack, or washing the dishes.
If there's a hand to lend, Fred is often the first to offer his. He is curious and outgoing, and he leaves a lasting impression wherever he goes, especially at school where everyone knows him.
His condition continues to evolve, but one thing never changes. Fred thrives on routine. He has autism spectrum disorder and prefers short sentences to long conversations.
Since childhood, he has faced challenges that most people will never encounter. The very first came on the day he was born.
A start to life marked by urgency
Fred is born into a silence that froze the room. No crying. No sound. His skin is bluish.
His mother, Stéphanie, waits desperately to hear her newborn's first cry. It never comes.
Instead, the baby is rushed to the nursery and then to the neonatal intensive care unit. Everything happens quickly. Carts race through the hallways. Machines flash. Alarms sound. Doctors quickly inform his parents that their baby is in critical condition.
Panic takes over.
Fred is urgently transferred to the Montreal Children’s Hospital, accompanied by his father, Luc. As soon as they arrive, doctors intubate Fred and place him in an incubator. He receives cooling therapy for 48 hours to protect his brain from a lack of oxygen.
The cooling blanket bears the Enfant Soleil logo. It’s small source of comfort for a worried father watching over his son. The days stretch on. Machines hum in the background, and medical staff come and go.
Hope arrives in tiny steps. After two weeks on a ventilator, Fred begins breathing on his own with the help of a nasal cannula. A small victory. Then another. His parents hold on to each one.
Answers and uncertainty
A series of tests begins, including blood work, X-rays, and genetic testing. The results paint a complicated picture: cleft palate, partial hearing loss, and a likely developmental delay.
Then, another answer emerges: a chromosome 16 abnormality. This abnormality puts his lungs and intestines at risk.
At that point, the doctors could no longer predict his life expectancy. For Stéphanie and Luc, each new piece of news feels like another wave crashing over them. They try to stay afloat, understand, and keep going.
Growing up, despite it all
As Fred grows older, the appointments keep coming. Sometimes, he has two appointments every week. A whole team surrounds him, including occupational therapists, physical therapists, respirologists, cardiologists, ophthalmologists, geneticists, and ear, nose, and throat specialists.
He also works with a speech-language pathologist who specializes in treating children born with cleft palates. Between the ages of two and nine, he undergoes three surgeries to repair the condition.
School brings its own challenges. Learning does not come easily. But Fred keeps moving forward. In third grade, he joined a program focused on social participation, which gave him the support he needed to learn and grow at his own pace.
Today, he is independent. He is also very proud of how far he has come.
"Behind the intellectual disability and all the diagnoses, there is a young man who wants to succeed and be given every opportunity to shine. Fred doesn’t let other people’s perceptions hold him back. He keeps moving forward and opening doors." — Jade, Frédéric’s special education technician
Illness has no place in a child’s life.
– Luc, Stéphanie and Alexandre (17)
Experiencing everyday successes
Discover the story of Fred, a curious young man who keeps moving forward in life despite his many challenges
