John Rogers is in the middle of an 800-kilometre journey with his two-year-old daughter Kallei to the Janeway Children's Hospital in St. John's because he and his wife can no longer afford her home care.
The journey has been slow, with frequent stops so Kallei's home-care worker can treat, clean and feed her through a tube straight into her belly.
Kallei Rogers has been severely disabled since birth and needs intense 24-hour care. That's why John Rogers and his wife Katrina had to hire round-the-clock caregivers.
"We would fall asleep and at some point in time it would be her life at risk just to stay home with us," said Rogers.
Home care cost skyrocketed
Until recently, her parents paid $400 a month for Kallei's home-care workers. The Rogers' insurance and the provincial government paid the rest.
Then Kallei's mother got a full-time job, and the province told the Rogers they would have to pay $2,100 a month for home care.
"It's just a huge amount, like 30 per cent of our gross income at least," said Rogers. "If it was something like 10 per cent instead of 30 per cent, it would be something that we'd be happy to pay."
Family made tough choice, says dad
Rogers said the family has made the tough choice to live apart - with Kallei in the Janeway in St. John's with her dad, and her mother at home, working in Stephenville.
"People need to have some dignity and they need to be able to better their lives," said Rogers. "We are trying to better our lives and that's why Katrina got a full-time job."
Rogers said Kallei's hospital care will cost about $1,500 a day.
He said he, Kallei, and her worker hope to make it to St. John's by Monday evening or Tuesday morning.