The game, the life | The Press

The atmosphere is festive in the living room of the Lighthouse, Children and Families. The music plays loudly. Volunteers, employees and young boarders clap their hands. In short, a day like any other in this pediatric palliative care home where children with a life-limiting illness stay.

Here, the end of life is only a background. It tends to increase when a child comes to spend his last moments there with his family, when a lantern with a flickering flame is hung at the reception, then when this flame goes out at the same time as the child. But for most of the young people who frequent the Maison André-Gratton, managed by Le Phare, in the Rosemont district, the end of life is not for tomorrow. Nor for the day after tomorrow.

“When you enter here, it breathes life, it breathes joy, it breathes love,” observes Jessica Lauzon, a specialist in adapted recreation who has worked at the Lighthouse for ten years. We don’t think about death, you know. Yes, we know it’s there, it’s present, but at the same time, death is part of life. When I look at these children, it’s not illness that I see, it’s not death at all. It’s the life they have in them. »

A life that still has a lot of potential, says pediatrician D^D Silvana Barone, medical director of the Lighthouse. “By their basic diagnosis, the majority of our patients are children with complex chronic conditions, therefore with either genetic or biological damage, which affects several systems of the body, several organs. They have a constant fragility, but they can live for years,” she notes.

Pediatric palliative care can be offered as soon as a child receives a life-threatening diagnosis. The D^D Barone regrets that they are wrongly associated when, faced with the absence of curative treatment, we give up. “In pediatric palliative care, we always have something to offer,” she notes. From support and respite for parents to symptom relief for little patients.

The essence of childhood

Massage therapy, music therapy, pet therapy, heated swimming pool, multisensory activities: the organization has placed play at the heart of its approach. Since 80% of children who attend Le Phare do not express themselves verbally, games are a powerful communication tool. But, above all, it is the very essence of childhood, recalls D^D Silvana Barone.

“We talk a lot, in our approach to palliative care, about relieving suffering, removing symptoms, but we also want to bring something to families, to bring them a little light in days that would otherwise be gray,” she says. . Every child has the right to care that respects his dignity and his humanity. »

Learning through play, promoted in educational circles, resonates here too.

According to a study published in 2014 by South African and English researchers on the role of play in palliative care for children, it is also one of the few activities that give the sick child a sense of control and freedom from the restrictions imposed by his illness.

As each child has their strengths and limitations, the adapted recreation team works to guide them towards activities that correspond to their needs and interests. “We want to get the little sparkle in their eyes. The thing that will turn them on, ”sums up Jessica Lauzon.

It’s not one, but several sparks that light up in the eyes of Elayna, 7, when the host shows her the huge mural she painted with an artist friend in one of the corridors leading to the bedrooms children. Embellished with fluorescent paint, the animals light up on contact with black light. Just like the rainbow Slinky that the host releases, much to the delight of Elayna who laughs, claps her hands and hops in her wheelchair.

During the month of December, other lights will light up in the living room of the Maison André-Gratton. They are those of the large Lite-Brite that the organization installed there for its fundraising campaign “Turn on your child’s heart”. The Lighthouse is looking to raise $200,000, which will allow it to continue to provide free services to children and families.

Donations represent 50% of the organization’s annual budget of six million dollars.

Light is also what drives Maëva, a 3-year-old girl with Pitt Hopkins syndrome. “It’s a genetic syndrome that affects overall development, both motor and cognitive,” explains his mother, Véronika Boivin. She has intellectual disability, hypotonia, epilepsy, food and drug allergies. This weekend, Maëva is having her fourth stay at Maison André-Gratton. She will stay there for five days. These are the only times when her parents, who have another 5-year-old daughter, can have both respite and peace of mind, since a team of doctors, nurses, attendants, recreation technicians and volunteers watch over the little boarders 24 hours a day.

“To be here, at the moment, we see it in her face that she likes it, that she is amazed, notes M^me Bovine. As soon as she sees other children playing, it makes her super happy. Stimulation is good for her. We have so many recommendations given to us by specialists that [jouer], it’s not the first thing we think of doing with Maëva. Kaelie [leur autre fille] isn’t really going to play with her sister, she needs it to be both ways, so it’s good for Maëva to see other children and to have people around her. »

For Jessica Lauzon, it is essential to get children to explore their imagination. “The imagination has no limits and that’s what Le Phare is all about: having fun until the end of your life. »