Just one sight of baby Everley and your heart will skip a beat, “she smacks her lips and has the most amazing laugh,” boasts Everley’s Dad Jordan Yolkowskie.

“She really is everything to us,” says Everley’s Mom Sarah Patterson, “I’ll never take these moments at home for granted.”

At nine-months old Everley has spent most of her young life at the Children’s Hospital of Eastern Ontario. She was born with a rare condition; it means her brain is unable to tell her body to breathe when she is sleeping. When she is awake she often loses her breath and passes out.

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

Two months ago, Everley’s parents made the courageous move to bring their daughter home, and care for her daily medical needs in the comfort of familiar surroundings. Since then, her mom says they’ve watched their daughter soar, “she is bright, she’s alert, she’s meeting all her milestones.”

Everley’s parents say even though they want to keep their daughter home, caring for her is expensive. They are paying nearly $10,000 each month for overnight nurses. They’ve asked the Ontario Government for financial help. They’ve offered to pay for 8-hours of nursing each day, the maximum allowable, but the family says they need at least double that. They want the government to make an exception for their extreme needs and are frustrated they’ve been forced to wait months for answers.

“People think we’re coping and we’re okay but we’re in crisis,” says Patterson, “we’re frustrated and we feel very alone in all of this.”

“It feels like it’s a game,” adds Yolkowskie, “none of them would want to be in our shoes.”

Ontario Health Minister, Eric Hoskins, told CTV News they are working on a solution, “I know that my ministry as well as the CCAC (Community Care Access Centre) has been working very actively on this case, and infact we’ve involved another ministry, the Ministry of Child and Youth Services, to ensure that we are in a position to provide the level of support this small child requires. As recent as yesterday I got an update, as did the local MPP (Conservative Steve Clarke), that gives me confidence that this will very shortly be resolved in a satisfactory way.”

For now the communities, the couple calls their ‘Halo of Angels’, in their hometowns of Smiths Falls and Renfrew, have raised about $25,000 to help the family. The CHEO Foundation is also providing 18-hours of support funding each week for the next month. Patterson, a trained nurse, is also considering getting a job to help pay some bills.

“If we can’t afford to stay home, then she goes back to CHEO,” says Patterson holding back tears.