Doctors predicted Bonnie Bieganski would only live to see her fifth birthday.

At 34, she's defied the odds, but now worries about her future.

"As I get older, it is harder to get over things." Said Bieganski

Bieganski lives with Larsen syndrome, a disorder that impacts the bones. All her joints are dislocated and the cartilage in her airways is not strong enough, so Bieganski requires a portable ventilator 24 hours a day.

She relies on round-the-clock care at home, including the full-time nurse she's had for 25 years.

"I have seen other ventilator people not be well, because they don't have this level of care," said Bieganski’s mother, Shelly Brown

Now, Bieganski and her mother say they've been told their nurse will no longer be provided, following an assessment by home care officials that determined she doesn't need the nurse.

Instead, shifts will be covered by health care aides. Shelly Brown, a nurse herself, said her daughter's nurse is more qualified to prevent deadly complications than the aides.

"We're not going to catch those bugs early and something like H1N1 will actually cost Bonnie her life, straight up, there's no questions about that." Said Brown

It's not just a life-and-death issue. Bieganski has an English degree and a counselling practice. Without her nurse, she said her independence and quality of life is in jeopardy.

"I wouldn't be able to be employed, to further my education, to do the things that I want to do with my life," she said.

They've applied to the Manitoba Health Appeal Board. The Winnipeg Regional Health Authority said it will take direction from the board.

"No action will be taken to change the client's care plan until the WRHA has received the decision of the appeal board," said the WRHA in a statement.

It's unclear how long that decision will take. Bieganski said her nurse is being pulled in one week.

"We don't do anything without a nurse saying yes, this is what we should be doing," said Bieganski.

Beyond the appeal board, Bieganski and Brown are considering legal action or filing a human rights complaint.