Caring for a child with a severe disability can shape every hour of a parent’s life, but if that child dies, it’s often a journey that comes with little support. With a new awareness campaign, non-profit group L’Étoile de Pacho wants families to know that during the most difficult times, they’re not alone. Xavier Gauvreau was two years old when he was diagnosed with a rare genetic disorder. For his parents, the diagnosis changed everything, and just shy of his fourth birthday, Xavier died in 2019. His dad, Pierre Alexandre Gauvreau, was devastated. “You’re not supposed to see your children die,” he said. Xavier’s story is where the L’Étoile de Pacho awareness campaign was born. For 13 years, the non-profit has been supporting families of children with severe disabilities - but it also helps grieving parents. Founder Nathalie Richard’s son David died last year. She says the help they offer is personal. “We’re not professional. We’re parents that helps other parents like us,” she said. The help is also practical, such as figuring out what to do with the medical equipment that once took over your home. “So we’re there with the family to help them when they come and pick up the bed,” said Richard. “We’re there to help them empty their luggage if they need to, or we can just sit there and be there if they need to. Each year, about five families supported by L’Étoile de Pacho lose a child. Matthew Park is the bereavement coordinator at the Montreal Children’s Hospital. “Grief, loss and specifically the loss of a child isn’t something that we often talk about,” he said. Having those conversations with parents who suffered the same loss makes a difference. “[It] allows them to open up a little bit more, so having trust these conversations are so important, and the support is so important,” said pediatric palliative care resident Dr. Lea Sultanem. After his son’s death, it was Gauvreau’s turn for support, and L’Étoile de Pacho stepped up. “My best way of going through that was to be able to speak with other parents that live the same thing at the time,” he said.
