Medication five times a day and complex care for seven days a week is not how Stephanie Hill Davie imagined the final weeks of her son Owen’s life.
“It’s so incredibly important to us to capture whatever moments we have left,” Hill Davie said.
Instead of devoting every second they have left to making memories, Hill Davie has been left with the burden of stepping in as his full-time nurse, she said.
“When is he going to get dignity?” Hill Davie said tearfully.
“When will his mom get to be a mom? When is he going to get the care that he qualifies for?”
At 11 years old, Owen has lived with a rare single-gene defect affecting multiple organs his entire life.
In the two months since his family was told the end was near, he’s already lost half his body weight down to just 19 pounds.
“The fact that he’s dying is a hard thing to wrap your head around,” Hill Davie said.
It’s been a month since the Provincial Health Services Authority approved 56 hours of palliative care a week and that home nursing support is nowhere to be seen.
“To date, the agency said they have yet to receive the contract,” Hill Davie said.
Owen’s mother said it’s just another chapter in his care as she’s been trying to get in contact with the health minister for years.
“There was a timespan when my husband called his office every day for three weeks,” Hill Davie told Global News.
Local MLA Ian Paton said he shares the frustration the family is feeling and is stumped in his own search for answers.
“We’ve got a file here half an inch thick of letters we’ve written to the ministry and we’ve done everything we possibly can but something has to change,” Paton said.
B.C.’s Health Minister did address Owen’s situation in an interview with Global News.
“I understand the PHSA is working with them and will be in touch with them soon about the care plan,” Adrian Dix said, B.C.’s Health Minister.
Hill Davie said she’s heard statements like this from the minister before.
The problem this time, she said, is that she can’t wait years to see if the minister will live up to his promises as her precious moments with her son are fading with each passing day.