A St. George woman who has been battling a rare and potentially fatal disease for four years has received another setback.

Erika Crawford was diagnosed with Ehlers-Danlos syndrome, which can cause the body’s connective tissues to degenerate, in 2012.

Her parents say she now takes “high levels of hydromorphone” to deal with the pain.

“She can’t go on much longer like this,” says her father, Darren Crawford.

“We’re just running on borrowed time right now.”

Crawford has undergone spinal surgery in Maryland, as her family was unable to find any doctors in Ontario who could perform the operation.

Her parents have spent more than $250,000 on treatment from the doctor in Maryland.

They have pushed the provincial government to allow that doctor to perform surgery on her in Ontario, but the province has resisted – choosing instead to train Dr. Mohammed Shamji of Mississauga to perform the operation.

Shamji has been working with the doctor in Maryland to learn more about Crawford’s condition, and was scheduled to operate on her Monday morning.

That changed on Friday, when the Crawfords received a phone call telling them the surgery was off – because Shamji was in police custody.

He is facing a charge of first-degree murder in connection with the death of his wife, Dr. Elana Fric-Shamji.

The body of Fric-Shamji, a physician, was found last week in a wooded area near Kleinburg, north of Toronto. Her cause of death has been determined to be a combination of strangulations and blunt force trauma to the head.

“We were just shocked,” said Darren Crawford, Erika’s father. “The news was pretty horrible to hear.”

Erika was especially distraught by the news. Her parents say she hasn’t left her room since the phone call came.

While the surgery would not have cured her of Ehlers-Danlos syndrome – there is no known cure – it would have given her a marked improvement in her quality of life.

The Crawfords have been told that another surgeon will be brought in to perform the surgery, but at this point they do not know who that surgeon is or when the surgery will be able to happen.

Crawford’s case also came up at Queen’s Park on Monday, with Progressive Conservative leader Patrick Brown citing it as an example of understaffing and underservicing in Ontario’s health care sector, and NDP leader Andrea Horwath calling on the province to “find any way possible to … ensure this young woman gets her surgery.”

With reporting by Alexandra Pinto and files from CTV Toronto