Two years ago, Erika Crawford was a typical Grade 10 student. She played soccer. She was full of energy and hope for the future.
Then she started getting headaches and feeling nauseous. Her joints started to ache.
They were the early symptoms of a rare connective tissue disorder called Ehlers–Danlos syndrome (EDS).
Today the 17-year-old from St. George Ont., vomits constantly. She’s confined to a wheelchair and her neck is in a permanent brace. She’s losing her vision and the fear of paralysis and death haunt her.
Instead of hanging out with friends and experiencing the thrills of youth, she takes morphine 6 times a day, dependent on her parents to perform the most basic of tasks.
“I can’t do anything I’m always in bed, always in pain, throwing up, joints dislocating, I never get a break, ever,” a physically and emotionally exhausted Crawford told CityNews.
But there is a glimmer of hope in the form of a costly surgery in the U.S. at a clinic that specializes in EDS.
The operation would stabilize her and could greatly improve her quality of life. But it costs $60,000, and the Ministry of Health has refused to pay, saying the same surgery can be performed here in Ontario, and has been, 35 times.
“Our guiding principles are, ‘do you need the procedure and can it performed here in Ontario?’ If not we fund them to go elsewhere,” said Minister of Health, Deb Matthews.
Her family counters that although the surgery has been performed by neurosurgeons in the province, it’s never been done on a patient with EDS. The doctor at the U.S. clinic has performed the surgery on EDS patients more than 200 times.
For the family, it’s a clear choice.
“Since (the surgeons in Ontario) don’t have experience with EDS patients and the complications that (can) arise during surgery, I don’t feel real confident in getting that surgery done here,” said her father, Darren Crawford.
The ILC Foundation, a charity that has been helping the family, agrees that it’s not worth the risk.
“If she were my daughter, I would not (have the surgery here),” said Sandy Smeenk, Exec. Dir. The ILC Foundation.
Crawford’s former classmates have been fundraising on her behalf, but the costs are daunting and will quickly snowball past the initial $60,000 for the surgery.
“It doesn’t matter,” her dad maintains. “We are going to do what we have to do. We are going to get her help.”
The family appealed the Ministry of Health’s decision not to pay for the operation at the U.S. clinic. They lost the appeal. They appealed again, but it doesn’t look like they can wait for the answer.
“The more and more we wait…the more pressure the vertebrae put on my artery and my brain stem, which could either paralyze me from the neck down, or rupture my artery and cause death,” Erika grimly notes.
So the family has decided to go ahead with the surgery in the States – and deal with the financial fallout the best they can.
Erika’s surgery is scheduled for October 9th.
You can help fund the operation by donating to any CIBC branch, account # 02-952-8490783
Lean more about Erika and her struggle with EDS here.