B.C. family denied nursing care for 21-month-old with rare disease

The B.C. government says it will review a request it previously denied from the family of a 21-month-old Langley girl who needs around-the-clock care.

Goldie lives with a rare,  undiagnosed disease that means she can’t suck or swallow, so a machine is needed to remove her fluids, and her parents have to do it for her up to 40 times an hour.

Goldie takes seizure medication. She can’t hold up her head or sit. She needs oxygen because she can forget to breathe while sleeping and she needs a feeding tube.

The young child sometimes requires up to five appointments a week at B.C. Children’s Hospital and she has to have someone sit next to her in the car.

Despite her complex medical needs, the province has denied them a day nurse.

“If we don’t get an appeal and don’t get nursing funding, it would be the most critical appointments (which) is all we’d be able to do,” mother Michelle told Global News.

“And also a lot of her treatments we pay for because they’re not funded or covered. And also, if I had to lose my job because I couldn’t work, our health insurance wouldn’t be able for her to have a lot of treatments.”

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Michelle and her husband both work and they also have a five-year-old daughter.

They explained to Global News that the system is flawed because if Goldie was in the care of foster parents, which they would never consider, she would get nursing care.

“The foster family would receive between six and $8,000 a month tax-free as income,” dad Jeff said.

“And then additionally, they’re often given up to 16 hours of nursing coverage, government-funded.”

Michelle said this is the heartbreaking part, as that means parents have to make the agonizing decision between keeping their child or keeping their home and having a roof over their heads and food in their stomachs.

“I think that no parent should ever have to make that decision,” she said.

Jeff and Michelle said they were not told why they were denied a day nurse, but they’re hoping for an appeal.

“She’s a little medical mystery and marvel that we love so much,” Michelle said. “Who’s not going anywhere — we won’t be giving you up, sweet girl.

“We’ll fight till the end for you.”

In a statement on Monday, Minister of Children and Family Development Jodie Wickens said she had “asked staff to review this case and connect with the family to discuss their situation.

Wickens added that the government wants “children with complex care needs to be supported to live full lives and in loving homes with their families wherever possible.”