The British Columbia government says it will review a previously denied request from the family of a 21-month-old Langley girl who needs 24-hour care.
Goldie lives with a rare, undiagnosed condition that prevents her from sucking or swallowing. A machine is therefore necessary to eliminate her liquids, and her parents have to do it for her up to 40 times an hour.
Goldie takes seizure medication. She can neither raise her head nor sit up. She needs oxygen because she can forget to breathe while sleeping and she needs a feeding tube.
The toddler sometimes needs up to five appointments a week at BC Children’s Hospital and someone has to sit next to her in the car.
Despite her complex medical needs, the province denied them a day nurse.
“If we don’t get an appeal and get funding for nursing, those would be the most critical appointments (which) is all we could do,” mother Michelle told GlobalNews.
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“And also a lot of his treatments we pay for because they are not funded or covered. And also, if I were to lose my job because I can’t work, our health insurance wouldn’t be able to afford many treatments.
Michelle and her husband both work and they also have a five-year-old daughter.
They told Global News the system is broken because if Goldie were placed with adoptive parents, which they would never consider, she would receive nursing care.
“The host family would receive between six and $8,000 a month, tax-free,” dad Jeff said.
“And then, on top of that, they often get 16 hours of nursing care, funded by the government.”
Michelle said this is the most heartbreaking part because it means parents have to make the agonizing decision between keeping their child or keeping their home and having a roof over their head and food in their bellies.
“I don’t think any parent should ever have to make that decision,” she said.
Jeff and Michelle said they haven’t been told why they were denied a day nurse, but they hope to appeal.
“It’s a little medical mystery and wonder that we love so much,” Michelle said. “Who’s not going anywhere?” We will not abandon you, my sweet daughter.
“We will fight to the end for you.”
In a statement released Monday, Minister of Children and Family Development Jodie Wickens said she had “directed staff to review this case and contact the family to discuss their situation.”
Wickens added that the government wants “children with complex care to be supported to live full lives and in loving homes with their families wherever possible”.
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