Ontario turns its back on ailing teen
Erika Crawford, a 17-year-old from St. George, Ont., has been diagnosed with a rare disorder called Ehlers-Danlos syndrome - or EDS. (Handout)
Erika Crawford is a beautiful young woman with big dreams — and a terrible disease.
The Brantford teen’s dreams include being able to play soccer.
The nightmare of her illness is that any small physical contact could cause her a catastrophic injury.
Erika, 17, has Ehlers–Danlos Syndrome (EDS), an inherited connective tissue disorder that among other things is causing her spine to press on her brain stem and the main artery in her neck.
Brantford Expositor reporter Susan Gamble first broke this story.
“I was told there was absolutely no cure or treatment available,” Erika told Gamble.
If she twists her neck too quickly it can cause her to have a stroke or cause damage to her brain stem that could paralyze her.
Erika saw scores of doctors before she finally got the devastating diagnosis in April. EDS can differ in severity from patient to patient.
For Erika it could be deadly unless she gets life-saving surgery in the U.S. with a doctor who specializes in EDS. No doctors in this province are experts in the disease.
The operation will cost about $60,000.
On Thursday the family got the devastating news from heartless OHIP bureaucrats that they’ve turned down her appeal. They won’t pay for her surgery.
Erika can’t wait. She’s living in the shadow of imminent death.
The surgery is booked for Oct. 9 and the U.S. hospital needs $30,000 on deposit before they can go ahead.
It’s disgusting a government that spent $230 million to cancel two power plants to save the jobs of a couple of Liberal MPPs, that squandered hundreds of millions more on Ornge, won’t spend a nickel to save a child.
Schools and churches are rallying with fundraisers.
While Health Ministry officials insist the surgery can be done here, those familiar with the complex nature of EDS say that’s just not true.
The problem is identifying an Ontario interdisciplinary medical team and neurosurgeon trained to perform the urgent, life-threatening and complex surgery that’s required on a 17-yearold girl, says a spokesperson for the charity Improving the Life of Children.
“The family would gladly stay here. This family is facing spending hundreds of thousands of dollars,” said ILC’s Sandy Smeenk. The U.S. doctor has offered to come here to perform the surgery and train doctors in this province.
Health Minister Deb Matthews insists the surgery can be performed here and says 97% of applications for out-of-country care get approved. She said 35 such surgeries have been performed here.
“Given that the application was not accepted, I can tell you there would be a reason for that and I can tell you that if a child or anyone needs a procedure, no matter how complicated that procedure is, and there’s someone here, or a team here who can do that then, of course, we don’t pay for someone to go out of province when that procedure can be performed in Ontario,” Matthews said.
That’s no comfort to Erika and her family.
On top of the stress of dealing with a desperately ill child, her mom, Michelle, is frustrated they must also fight an uncaring health bureaucracy.
She says doctors here aren’t EDS specialists, while 90% of the U.S. doctor’s patients suffer from the condition.Erika has complex complications, such as an underlying blood disorder and connective tissue problems. Shame on this government for letting a child like Erika down.
To help, give to the Erika fundraiser at any CIBC branch. Transit number 029528490783.