The reality of palliative care is never very joyful, especially for children. Despite this, the staff who work with children with limited life expectancy strive to sprinkle a little magic during the festive season. Families from the Le Phare organization can attest to this. Le Phare, located in Montreal, serves approximately 200 families and has 12 beds on site to provide respite for parents or to welcome them when their child is receiving end-of-life care. The organization serves a diverse clientele, including children with cancer whose prognosis is uncertain, as well as children with metabolic, genetic or neurological diseases that greatly impact their health. For many of these children, their life expectancy is unknown because their disease is rare. This is the case for little Adrien, aged four and a half. He was born with a rare genetic disease, of which there are only about 20 similar cases worldwide. He is the youngest of four siblings. Adrien is severely disabled. He is blind, partially deaf, epileptic, tube-fed, has no muscle tone, is non-verbal and has a significant intellectual disability. “Palliative care for children is not at all like palliative care for adults. Adrien may be in paediatric palliative care for 18 years. We don’t know his life expectancy, as there are only 20 others like him in the world and there is no data on life expectancy. So we enjoy each day as if it were our last, not knowing what tomorrow will bring,” says his mother, Gabrielle Gonthier. Last Monday, Adrien was able to attend a parade of emergency services -- organized for the children of Le Phare -- where police officers, paramedics and firefighters paraded in their emergency vehicles, including an armoured truck. There was also the mounted police and the Montreal police (SPVM) canine squad. Meanwhile, Gonthier was able to attend Adrien’s sister’s Christmas concert. “It made it a little easier for us to manage the pre-Christmas period,” she said. Ariane Parent-Lemay, director of care and services at Le Phare, explains that the parade, which has been held for six years now, serves to brighten up the daily lives of families. “It’s a reminder that the magic of the holidays can be more difficult for some, but we are still able to bring beauty and joy, to bring a little bit of that magic despite the difficult times our families are going through. Even at the end of life, we are able to find moments of light,” she emphasizes. Moments of happiness, a privilege for employees An employee of Le Phare who adopted a child with multiple disabilities three years ago wished to remain anonymous, as this is a personal matter. Although she has a background as a nurse and has been “immersed in multiple disabilities” since she was young, the reality of caring for a severely disabled child was very different from what she had anticipated. Her child does not have a degenerative diagnosis, but due to his neurological fragility, he is more prone to complications. In particular, he has epilepsy, which affects his cognitive, motor and socio-emotional development. At Christmas, travelling from one family to another is exhausting, says the mother. “We go left and right, but that means lugging around a wheelchair and all the protocols in case they start to feel unwell. It’s like moving house, even for a Christmas party. Is it worth it? I’ll do it anytime, but it takes a lot of organisation,” she says. In December, she took advantage of respite days, which allowed her to rest at home before the holidays while her child was in the care of the palliative care home staff. As an employee of Le Phare, she recalls the shifts she worked during the holidays, moments she describes as pleasant, “when time stands still.” She remembers one evening, on Dec. 31, when the employees counted down the New Year in the room of a dying little boy with his family (at their request). “As much as these moments can be difficult for families, they are also moments that families cherish deeply. They take what they can get. It can be emotional knowing that it’s the last Christmas. At the same time, they have that last Christmas, so they take everything they can to enjoy it. It’s a privilege as an employee to be able to share these intimate and beautiful moments with families,” she said. Removing the guilt from parents This year, Gonthier and her family decided to celebrate Christmas more intimately at home. In other years, Adrien celebrated at Le Phare while the family attended festivities with extended family members who live in other parts of Quebec. Parent-Lemay mentions that many families feel guilty about leaving their child at the palliative care home during Christmas and New Year’s. She believes that we need to work to demystify this guilt about taking respite during this period because, in the end, it allows them to take care of themselves so that they can better care for their child afterwards. “The idea is to allow them to enjoy the holiday season, a time when there is a lot of human warmth. It brings us back to the essence of being together, of sharing a moment of connection. That’s really important for parents. Knowing that during the holidays, their child is in a place where they will have fun and flourish, but also where they will be seen for who they are, for what they are capable of being not just their illness,” said Parent-Lemay. During the holidays, there are always gifts for the children at Le Phare and for their brothers and sisters as well. Santa Claus also makes an appearance, much to the delight of the children. There are also artistic performances with partners such as Les Grands Ballets Canadiens and the Orchestre Métropolitain de Montréal. This report by The Canadian Press was first published in French on Dec. 20, 2025. The Canadian Press’s health coverage is supported by a partnership with the Canadian Medical Association. The Canadian Press is solely responsible for this journalistic content.
