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Ont. teen risks all to seek relief from rare disorder


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Long read, but worth it in my mind. There's a gofundme page at the bottom in the link for anyone too.

Sixteen-year-old Caroline Smith knows the surgery might kill her and cost her dad every cent he has. But those are risks the Oxford County teen will take in two weeks to escape a life where friends shun her, doctors dismiss her 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.

“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, from Princeton, near Woodstock, has a condition that weakens connective tissue like ligaments that bind bones: Ehlers-Danlos syndrome affects one in 5,000, only some of whom suffer the worst symptoms.

The toll on the teen 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 Aug. 20 to support a spinal cord that no longer safely supports her head.

Smith’s father Bruce, who’s looked after her as a single parent the past three years, isn’t wealthy: He doesn’t own a home, and while he works in a scrap yard, he’s seeking help from friends and strangers because the Health Ministry hasn’t agreed to pay for surgery outside Ontario.

“It hurts to watch her, how much pain she’s in. . . . We came in to the emerg one day . . . 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 of four years,” Smith said. She’s not alone in misery.

About 100 Ontarians have Ehlers-Danlos, with about 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.

“(Some) neurosurgeons here have such big egos, they say, ‘If I don’t know about it, it doesn’t exist’, ” Crawford said.

For Caroline Smith, though, one doctor has been a godsend — London pediatrician Tony D’Souza, who started a practice here after forming and leading the pediatric emergency department at McMaster University Children’s Hospital.

In the face of several obstacles, D’Souza has been fighting for a teenager he calls determined and vibrant. Each time he sees her, she gets worse and worse. “The neck issue is pressing,” he said. “Could she die? I don’t know.”

It was D’Souza who reached out on Smith’s behalf to surgeon Fraser Henderson, who’s done about 2,000 operations on those with Ehlers-Danlos, including on Erika Crawford, in a facility in suburban Washington, D.C.

Henderson responded in two weeks and said he’s re-arranged a busy schedule so he could see and treat her. “He’s not doing this because he wants the business,” D’Souza said.

Not a single Ontario surgeon has stepped forward to say he or she could do the surgery, he said. As for Bruce Smith, there’s no way he’d allow an Ontario surgeon to cut open his daughter without having extensive experience doing spinal surgery on patients with Ehlers-Danlos. “(I’m not going) to trust someone from here (to) use her as a guinea pig,” Smith said.

Caroline Smith leaves for Maryland Aug. 18 and will have surgery two days later — Henderson required an initial payment of just $20,000 so the operation wouldn’t be delayed.

While there is speedy treatment south of the border, governing Liberals in Ontario won’t pay. “These cases are heartbreaking,” then Ontario health minister Deb Matthews said in September 2012.

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