Seventeen-year-old Erika Crawford is preparing for surgery south of the border that could save her life, as her parents scramble to raise $60,000 after the province decided not to cover the procedure.

Ontario Health Minister Deb Matthews has said the surgery can be done in Ontario, but Erika’s parents say 28 of Ontario’s doctors couldn’t even diagnose her condition.

Erika was an active teen and competitive soccer player until two years ago when her connective tissues started to weaken.

“I’m always in pain, everywhere, my bones, my joints, tremors, I’m losing vision in one of my eyes,” she says.

Erika has Ehlers-Danlos Syndrome or EDS, a genetic disorder that causes the collagen in the body, which strengthens skin, bone, blood vessels and internal organs, to break down.

She remains defiant despite the pain, “I have EDS, but it doesn’t have me.”

But now her spine is pressing on her brain and the main artery in her neck, leaving her at risk of having a stroke or becoming paralyzed if she turns her head too quickly.

She needs surgery, but her father Darren Crawford doesn’t believe Ontario’s surgeons have the expertise needed and says their only hope is a doctor in the U.S.

The doctor has performed 200 surgeries on EDS patients, but OHIP is still refusing to pay because Matthews says 35 such surgeries have been performed in Ontario.

The American surgeon plans to remove one of Erika’s ribs and fuse it in her neck to stabilize her spine and relieve the pressure on her brain.

Michelle Crawford, Erika’s mother, says “She’s very strong, she doesn’t let anything seem to bother her, but deep down I know she’s suffering inside by herself.”

The family’s anxiety about the procedure has been heightened by the province’s decision not to fund the surgery.

“I feel very let down that is that what the health plan has done for us. I pay taxes like everybody else,” Darren says.

But the family is also feeling a lot of gratitude. More than $30,000 in donations have come in so far, including $10,000 from students at Erika’s school, St. John’s College in Brantford.

The surgery is scheduled for next Wednesday.