Juliette's village
Juliette lived for almost 8 years without a definitive diagnosis aside from "a significant neurological impairment." At 4 months old, Juliette was this little girl in a big girl's body that was ravaged by her affliction. It was when Juliette was 4 years old, following a severe bout with pneumonia, that the extraordinary team at Ste-Justine's spoke with us about palliative care for the first time. We had reached that point, the point of asking THE question, the question that no parent wants to be asked, let alone having to consider.
Following careful consideration, we opted for Le Phare, which offered us the possibility of staying together, the entire family, in an environment that was both comforting and less stressful.
To experience this community, this "village", come into being, is truly comforting.
Juliette, surrounded by volunteers et de Julien, higher up, nurse
"Every one of us, in our own way, makes a difference in how a family navigates their unexpected journey. Affording a family the opportunity to break free from their isolation to join in and be accompanied by the "village" is essential."
– Marion, social worker
After Le Phare's charity run in April of 2019, Juliette went in for respite care while the extended family prepared to leave for a week of rest in the sun. It was to be just another respite stay. A few days before our return, her condition deteriorated rapidly and she passed away at Le Phare, surrounded by my in-laws, and us… albeit from a distance. Juliette had chosen to embark on her personal journey at the same time as us.
Juliette and Tamara, patient care attendant
"Le Phare is a vital resource for families. From my perspective, I see and experience it."
– Véronique, nurse
I’m still quite emotional when I remember how the entire team gathered, forming an honor guard around Juliette as they accompanied her to the exit of Le Phare. Seeing the pain so evident in their shared countenance, sensing the attachment and love they felt for her. It is profoundly moving to realize the extent to which my daughter touched so many others outside of our immediate family.
Marie-Eve, Juliette's mother; Juliette died at Le Phare; she was 7 years old
Lyne St-Martin
Executive Director
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