By Jill Macyshon, Alexandra Mae Jones: For Complete Post, click here…
When Carla Garrett’s son, Xavier, was diagnosed with a brain tumour as a baby, there were few resources to help her understand what it meant to navigate palliative care for a child.
Now, Garrett, along with other parents who have lost their children, care providers and medical experts, are launching a website designed to support parents going through the terrifying ordeal of caring for a child who may have limited time.
Garrett told CTV National News that when Xavier was diagnosed with an incurable tumour, it was difficult to understand what it all meant.
“It’s really hard to process that information,” Garrett said. “It just doesn’t sink in. And it really didn’t sink in for me until I had another mother explain all the supports we could get with paediatric palliative care, if we accepted the care.”
Xavier, who died a few years ago just shy of his eighth birthday, had a rare form of brain cancer which had survival rates just between five and 25 per cent.
His parents spent years travelling a painful and often lonely journey through the medical system in search of the best care for him — and they are far from alone. In Canada today, as many as eight thousand families are caring for a seriously ill or dying child.
The aim of this new website, is to provide those families with support that wasn’t accessible back when Xavier was first diagnosed.
Called ‘caringtogether.life’, the website is the first of its kind for child palliative care, based off the model of the adult version for Canadian Virtual Hospice, which provides information and support on palliative care and advanced illness for adults.