An Eastern Ontario couple whose baby daughter suffers from a rare condition say they feel abandoned by the Ontario government as they seek round-the-clock care for the nine-month-old.

Sarah Patterson and Jordan Yolkowskie’s daughter Everley was born with congenital central hypoventilation syndrome, a rare condition in which her brain is unable to tell her body to breathe when she is asleep. Even while awake, she often turns blue and passes out.

“Some days we’re resuscitating her multiple times per day,” Patterson says.

To manage her condition, the little girl requires constant care. Both of her parents have been unable to work since she was born.

Patterson and Yolkowskie have been pleading with the Ontario government to fund at-home nurses so Everley can stay out of the hospital.

After Everley’s story appeared on CTV News last month, the Ontario government offered the family eight hours of nursing care each day.

While the offer represents the maximum allowable time the government says it can provide, Everley’s parents say it falls short.

“It does not meet our needs at all,” Yolkowskie told CTV Ottawa.

Everley’s parents say they are hoping the government will make an exception, as she requires at least twice that amount of care.

Patterson said the family is “coping,” but they remain in a “crisis.”

With the help of money raised through community fundraisers, the family is paying $10,000 out of pocket each month for at-home nurses.

Ontario Health Minister Eric Hoskins says they’re actively working on Everley’s case, and that he and local MPP Steve Clarke recently received an update that “gives me confidence that this will very shortly be resolved in a satisfactory way.”

He told CTV News that the Ministry of Child and Youth Services has become involved, “to ensure that were are in a position to provide the level of support this small child requires.”

In the meantime, Everley’s parents say they are losing hope.

“It feels like it’s a game, one big game that’s going on,” Yolkowskie said, adding “it’s really hard.”

Patterson said their daughter is “everything” to them. If they can’t afford to stay at home, she said, her daughter goes back to the Children’s Hospital of Eastern Ontario, where she has spent most of her young life.

“I’ll never take any of these moments at home for granted,” a tearful Patterson said.

With a report from CTV Ottawa's Catherine Lathem