Winnipeg woman with rare genetic condition pleads for government help

A Winnipeg woman with a rare genetic condition says the province can’t give her the care she needs.

Crystal Lee Rondeau, who has spinal muscular atrophy type 2, has been a patient at the Health Sciences Centre for almost 19 weeks. She says hospital staff is not equipped to handle the complex needs of her condition.

But Rondeau says if she leaves the hospital, she has nowhere else to turn.

“Basically, anything that you can think of, I need someone to do for me,” said Rondeau, whose condition requires full-time care.

“The UAs (unit assistants) and the nurses are having difficulty meeting Crystal’s daily needs. They are unfamiliar with her very specific needs, because her care needs are very specialized,” said Rondeau’s mother Cheryl.

Rondeau is falling through the cracks at HSC, according to her mother. The family has tried to get Rondeau into the Riverview Health Centre, but they say she didn’t meet the criteria.

“Part of the criteria that has to be met for Riverview is you have to be able to use a Hoyer lift for their safety guidelines in case of an emergency,” Cheryl said. “They have to be to put them in a Hoyer to transfer them, whether it’s into their wheelchair, or out of the building in case of an emergency. Crystal can’t meet that need.”

Shared Health says while it can’t comment on specific patient cases, it’s working to provide the best care possible for all patients no matter the circumstance, acknowledging there can always be room for improvement. Patients are offered a bath each day and are provided with regular meals with feeding assistance, if required. In cases where patient mobility may be limited, staff movement of any patient must comply with facility safe patient protocols.

The province has offered 55 hours per week of care under the Self and Family Managed Care branch of Home Care services, but Rondeau and her family say it isn’t enough.

“With Crystal being absolutely dependent on absolutely every aspect of her life, 55 hours at home of having help and the other 113 hours provided by myself is a lot. Crystal could return home, if we had adequate support,” said Cheryl.

The family is hoping the province creates a program that helps individuals with disabilities hire personal care assistants for 24/7 care.