Angelina Premia was the centre of attention at all family gatherings – her infectious hugs and laughter lit up the room. Angelina loved her family. Despite her health challenges due to a rare genetic disorder, she was a true fighter through all the obstacles she had in life – and she did it with a smile.
When she passed away in 2021 due to chronic kidney disease associated with Oral-Facial-Digital Syndrome Type 1, she was on the Canuck Place Children’s Hospice pediatric palliative care program. While her parents, Helen and Sam, and older sisters, Hannah and Sharon, struggled to come to terms with her final weeks and were devastated by her death, the care team from Canuck Place helped them cope.
“Having Canuck Place grief counselling available to our family has been a great asset,” says Sharon. “There is no rule book for grief, and it presents uniquely to each of us. I think we’ve all made use of the counselling services, and it just helps to have someone walk you through one of the most difficult times in your life.”
Angelina spent the last few weeks of her life at home with the support and guidance of the Canuck Place team.
“What started off as a check-in with the doctors turned into the unimaginable – us receiving her final diagnosis of kidney failure,” says Hannah. “After approximately a week in the hospital, we had made our decision of pursuing palliative care, and the hospital referred us to the Canuck Place program.”
The family did not know what to expect from a pediatric palliative care program, and having Angelina home and well cared for was the family’s top priority. “But after talking with Canuck Place nurses and over multiple conversations, I was able to feel a little more at ease,” says Hannah.
“We wanted to make sure she was comfortable, and the nurses and physicians from Canuck Place did exactly that,” says Sharon. “They respected our wishes for her to be at home with the people she loved the most.”
“From dietary and medication support for Angelina, to emotional support and in-home physical check-ins, Canuck Place was able to provide consistent around-the-clock care in the comfort of our home,” says Hannah. “I knew Canuck Place would be there to care for Angelina, but having their counselling and in-home support extend to all members of our family was something I wasn’t expecting.”
Helen Premia says the Canuck Place team was incredible. “Our Canuck Place nurses and nurse practitioners were Alison, Camara and Rachel. They helped us through Angelina’s final days, particularly during the last two weeks when Angie’s food intake reduced considerably, a time that was so unbearable for us as parents,” she says.
Canuck Place is where humanity exists, and you realize how much good there is in the world. Where people you don’t know or have never met stand by your side and walk alongside you as you do one of the hardest things in life: saying goodbye to a loved one.
Sam Premia says having someone to talk to when overwhelmed by grief was a great relief. “I am so thankful to the Canuck Place grief and bereavement counsellors just for being there for us when we need it.”
For Sharon, Canuck Place represents a place where you feel loved, supported and cared for in your darkest days.
“Canuck Place is where humanity exists, and you realize how much good there is in the world. Where people you don’t know or have never met stand by your side and walk alongside you as you do one of the hardest things in life: saying goodbye to a loved one,” she says.
Hannah says the support of donors to Canuck Place allowed her family and many others to receive hands-on care during one of the hardest moments in their lives.
“The generous financial contributions from donors directly supported our family by allowing us to spend our last few weeks with Angie while providing her with the necessary medical support and bringing her comfort and joy,” she adds. “This would not have been possible without the generosity of the community, and for that I want to personally thank each and every individual who donated. This small action demonstrates incredible kindness towards our family.”
You can support families like the Premias through Canuck Place’s Light a Life. Every gift will support children with life-threatening illnesses and their families to live fully during the time they have left. With you, Canuck Place gives short lives the chance to shine. Light the way. Give today.
A version of this story appeared in The Globe and Mail on November 10.