A little 18-month-old Septilienne was born with a rare congenital malformation which makes her suffer terribly on a daily basis. Her mother is on her eighth brain operation.
Daphnée Tremblay was born with a malformation that went unnoticed during ultrasounds. The parents noticed that she had one arm shorter and one hand smaller than the other. “His fingers are crooked and two fingers are stuck together,” explains his mother, Mylène Lavoie.
“In Quebec, only two children per year are born with symbrachydactyly,” she emphasizes.
She quickly took steps to consult a specialist. “In Sept-Îles, I was told that it would do nothing for his life,” she says. “Except that in his case, it took a completely different turn. »
The child’s daily life is affected. “She can’t touch the heat or the cold, because it causes pain,” says Ms. Lavoie. His hand swells and turns purple. “Recently, we learned that she also had Poland syndrome, which would be linked to her malformation. »
“The rib cage sinks in from the inside, at the level of the breast,” she illustrates.
Medical wandering
“My daughter is in medical wandering,” laments Mylène Lavoie. No one can explain why his hand is swelling. “We are waiting for general anesthesia for a vascular X-ray. »
The family is waiting to know what is happening with the nerves, blood vessels and bones. What is formed and what is missing.
“My daughter screams and cries at night, it’s incredible,” says the mother. “We comfort her, but we feel helpless. »
A second medical opinion was requested.
“Quebec only wants to see it once a year, I don’t agree with that,” she said. “At the age she is, she suffers extremely from pain, I do not accept it and neither does her doctor,” she said, waiting for an appointment at Sainte-Justine hospital. , specialized for children.
Sick mom
Mylène Lavoie has been on disability for approximately five years.
“I’ve had eight brain operations,” she says. “I have a drain, I almost lost my sight. » It must also be followed outside the region. “Daphne coming through all of this is very difficult,” she said. “Physically, mentally, monetarily…”.
Relatives are present. “We all live with my parents. »
His mother accompanies him both for his appointments and for those of Daphnée. Monetarily, it’s difficult. “I don’t work and my parents had to pay around $26,000 in one year for me,” she says.
Several businesses and citizens made monetary donations to the family.
In addition, a Halloween country evening organized by Yannick Norman is planned at the Sept-Îles Convention Center on November 2, 8 p.m. All profits will be donated to Daphnée’s family.
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