Murphy Valois

“Living with the unknown, especially when it’s your child, is incredibly difficult.” - Jeannick, Murphy’s mother 

 

Illness has no place in a child’s life. 

 

A night from hell 

Murphy was just four months old when, one evening, her little body stiffened, her eyes rolled back and uncontrollable spasms shook her. Panic-stricken, her mother Jeannick scooped her up and rushed to the emergency room. The diagnosis came after an electroencephalogram: infantile epilepsy. The seizures could damage her brain, and every minute mattered. Even before her birth, ultrasounds had raised concerns, showing slowed growth. Doctors at the Centre-de-la-Mauricie hospital in Shawinigan decided to induce labour earlier than planned.  

From her very first moments of life, Murphy’s silence sounded like an alarm. Her heart rate dropped, and she was immediately transferred to the neonatal unit. After six days in hospital, she was finally able to go home, but her fight was far from over. The months that followed were filled with medical appointments and growing concern. Murphy showed troubling symptoms: strabismus, persistent congestion and reflux. Then, one night in January 2021, everything changed with her first major seizure. A race against time began to control the convulsions before her young brain could suffer lasting damage. Hospitalized at the Centre mère-enfant Soleil at the CHU de Québec–Université Laval, Murphy underwent multiple treatments as the team searched for a solution. Thanks to specialized care and equipment, doctors finally found a treatment that helped: high-dose cortisone. After three weeks in hospital, her parents finally received hopeful news. In April 2021, Murphy was in remission.   

An extremely rare syndrome 

A year and a half later, genetic testing brought further clarity: Murphy has ZMYND11 syndrome, a rare genetic disorder causing epilepsy, intellectual disability and behavioural challenges. With only two known cases in Canada and around fifty worldwide, Murphy is navigating a largely uncharted medical path. 

Today, Murphy does not yet walk or speak, but she discovers the world in her own way. She works tirelessly with her physiotherapist. Always on the move, she loves exploring nature, letting the wind and water surprise her. Her joy is contagious, but her frustrations are very real: expressing herself is difficult, as she also lives with autism spectrum disorder. Her family has adapted and grown alongside her. Her older brothers make her laugh, her big sister acts as a second, fiercely protective mother, and her parents live in a constant state of vigilance, having become the true experts on Murphy. With love and determination, they move forward together, one day at a time, without trying to predict the future. 

Thanks to your generosity, there are beautiful things on the horizon for children like Murphy.

– Marc, Jeannick, Gabrielle (12), Zachary (10), Charles-Alexis (9) and Laurence (2)