Le Phare palliative care home: more than a place for children’s last moments
The Lighthouse, Children and Families welcomes young people with severe disabilities who come to find palliative care or who stay there so that their parents can get some respite.
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Marie-Ève Lepage uses respite services for her son Nicolas, who is 8 years old and has a serious genetic disease called FOXG1.
“It absolutely takes that to rest, recharge, sleep, she explains. He’s still in diapers, so we have to change his diapers several times a day. He spent the first two years of his life crying 24 hours a day.
The feeling is the same for Patrick Bilodeau, father of Jade, 13, suffering from Rett syndrome and who recently had pneumonia.
“The Lighthouse brings him a lot,” he says. We come mainly to look for the respite option. […] It gives us back a weekend during which we can accomplish a lot of tasks that we don’t have all the time to do normally.
Since the beginning of the year, 200 families have passed through its 12 rooms and 13 children have died there while receiving care from nurses and six doctors who take turns.
Multiple stakeholders offer basic and recreational care such as music therapy and pet therapy.
“It’s really to practice the profession with people who are very suffering, but at the same time, it’s a beauty, really, to see their vulnerability and to be present for them”, explains the family doctor. Marie-Pascale Ethier.
A fundraising campaign is underway as the Lighthouse must collect $3 million annually from the public to continue offering its services.
No less than 1,000 children from all over Quebec have benefited from it since its inauguration in 2007.
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