North Vancouver’s Mireille Larosa and Martin Archambault were alarmed when seven-month-old baby Charles had the first of what would be many tonic-clonic seizures – this one lasting an agonizing 30 minutes.
In shock and disbelief, they found themselves at Children’s Hospital in the neurosurgery ward, where they were introduced to Canuck Place Children’s Hospice Medical Director, Dr. Hal Siden. It was in that moment that everything changed.
Not only were they faced with the gravity of Charles’ diagnosis with Alper’s Syndrome, a rare and incurable mitochondrial disorder, they were given a saving grace that would keep their family whole during their darkest moments.
“Pediatric palliative care is complex and uncertain and has to be approached as both an art and science,” says Dr. Siden. “The magic of Canuck Place is that we see and recognize the unpredictable, that uncertainty, and we lead with a gentle therapeutic approach that respects the uniqueness of every family’s situation.”
The family, including older brother William, went to Canuck Place directly after being referred from Children’s Hospital. While staying in-hospice, Canuck Place nurses and doctors cared for the whole family, ensuring they had the strength and skills to manage Charles’ complex medical care at home, including how to administer the many medicines he required to manage his symptoms.
“I knew I could fully trust them to take care of baby Charles. I could sleep, read a book, spend time with William and Martin and bring back a sense of normal even if only momentarily,” says Mireille. “Canuck Place nurses cared for me wholeheartedly too, they empowered me and taught me so much.”
In addition to the complex medical care they received both in-hospice and in-home through the 24-hour clinical care line, Mireille and Martin also received invaluable grief and bereavement support from Canuck Place counsellors.
“The terminal diagnosis of our sweet baby Charles shattered me to my core. Canuck Place counsellors helped me navigate my new reality, guide me, ground me, and by extension my family, as our world fell apart,” Mireille says.
Every light is precious, no matter how long it shines. Baby Charles’ light, with his beautiful golden hair, and his big brown joyful eyes, shone bright and touched the lives of many. The Canuck Place clinical team helped the Archambault-Larosas create lasting memories that are now priceless reminders of a life lived.
“Canuck Place allowed baby Charles to live the best life he could. They always sought ways to increase his comfort, and improve the effectiveness of his treatments,” Martin says. “The day Charles passed away, William had an excursion to a farm with Canuck Place recreational therapists, and brought back a sunflower for Charles. To this day, sunflowers have a special meaning for us.”
There is a sense of isolation that comes from caring for a terminally ill child. Death and grieving of a child are unthinkable. Canuck Place makes dying a part of living. They honour a family’s individual grief journey, which reduces suffering and helps the whole family live well after the child has passed.
“To all the donors, no amount of words can explain how important Canuck Place is to our family,” Martin says. “We are stronger than ever as a couple, William is thriving, and making new joyful memories of Charles and Canuck Place with his new baby brother Theo. William today is a fine gentleman with a kind and tender heart, surely moulded in part by his experience at Canuck Place.”
For 25 years, Canuck Place Children’s Hospice has been providing exceptional complex medical care, while helping children and families embrace living fully with the time they have left together. But not without donor support. You can light a life this holiday season for Canuck Place children like Charles.
Light the way. Give today. Donate by Dec. 31 and your gift will be matched by John & Claire Nicola and friends. canuckplace.org/donate