‘It hurts to watch her’
Teen, father pin hopes on surgery that Ontario has refused to fund
Caroline Smith knows the surgery might kill her and cost her dad every cent he has.
But those are risks the Princeton, Ont., teen will take to escape a life where friends shun her, doctors dismiss her as crazy and Ontario health ministers have left her and others to suffer with a rare disorder that can cause bones to dislocate at the slightest touch or movement.
“I can’t have (any) physical contact. ... I can’t risk my neck being injured in any way. If I pick up something wrong, I could dislocate my wrist or my thumb,” she said this week.
Smith, 16, suffers from a condition that weakens connective tissue. Ehlers-Danlos syndrome affects one in 5,000 people, only some of whom suffer the worst symptoms.
The toll has been immense: horrendous pain, limbs that pop out of their sockets, bowels she can no longer control, blood pressure that drops so she passes out and a spine so fragile a small blow to the neck might leave her a paraplegic.
Last year alone, Smith went about 200 times to emergency rooms and doctors, but it’s her next appointment that’s critical and expensive: A Maryland surgeon and facility will charge $100,000 to fuse a bone to her neck on Aug. 20 to support a spinal cord that no longer safely supports her head.
Smith’s father, Bruce, a single parent for three years, doesn’t own a home and works in a scrap yard. He’s seeking help from friends and strangers through an Internet campaign because Ontario’s Health Ministry hasn’t agreed to pay for surgery outside the province.
“It hurts to watch her, how much pain she’s in. ... We came in to the emerg one day after she was taken by ambulance from school, with her crying, saying, ‘I’m not crazy,’ and the doctor, calling a psychiatrist, saying she is. This is basically how she’s been treated the last three or four years,” Smith said.
About 100 Ontarians have Ehlers-Danlos, with as many as 20 with symptoms so severe their lives are consumed seeking help from doctors who don’t know what to do, said Darren Crawford, whose 19-year-old daughter, Erika, has undergone two American surgeries at a cost of $185,000.
London pediatrician Dr. Tony D’Souza reached out on Smith’s behalf to Dr. Fraser Henderson, a surgeon who’s done about 2,000 operations on those with Ehlers-Danlos, including on Erika Crawford, in suburban Washington, D.C.
Caroline Smith leaves for Maryland Aug. 18 and will have surgery two days later.
“These cases are heartbreaking,” then-Ontario health minister Deb Matthews said in September 2012. Three years later, the Health Ministry is still fighting to keep the Crawfords from being reimbursed for the $190,000 spent on Erika’s surgeries, and Matthews’s successor, Eric Hoskins, has not answered calls for help.
Last month, Hoskins issued a statement, writing that his ministry had identified specialists who would decide the best course of care here or outside the province. But more than two weeks later, no one from the ministry had contacted the Smiths or the Crawfords.