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Ontario signals it is willing to pay for tot's eye-disease treatment

Three-year-old Liam Reid, who suffers from a retinal disease called persistent fetal vasculature syndrome, plays with his mother Kristina in Whitby, Ont. Wednesday, May 2, 2012.

Kevin Van Paassen/The Globe and Mail

After nearly three years of refusing to reimburse the family of a young boy suffering from a rare congenital eye disease, the Ontario government has reversed course, signalling that it will fund the vital treatment for Liam Reid.

"If we can't offer the care here in Ontario," Premier Dalton McGuinty told reporters Wednesday, "then we've got a responsibility to make sure he can access that care elsewhere."

The Reids – who are still awaiting official confirmation of funding from Ontario bureaucrats – first shared their story last month with The Globe and Mail. Liam, who turns three years old on Monday, suffers from advanced bilateral persistent fetal vasculature syndrome (PFVS)/Norrie's disease, a rare retinal condition that, if left untreated, would result in permanent blindness and the loss of both eyes by his next birthday.

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The family spent more than $45,000 out of its own pocket for surgery and semi-annual follow-ups in the United States because Ontario's health-insurance plan repeatedly denied funding, arguing equivalent care is available here. This was despite the fact that doctors in Toronto told the family they couldn't do anything more for Liam and directed him to a world-renowned vitreoretinal surgeon in Michigan.

Liam's plight sparked an outpouring of support, calls from Progressive Conservative health critic Christine Elliott to fund the treatment, and last week Health Minister Deb Matthews promised the Reids that she would investigate to make sure procedures were followed.

Ms. Matthews said Wednesday that she has not yet heard back from her ministry officials after she instructed them to take another look at the case. But she echoed the Premier's comments.

"This is a little boy. He deserves the best possible care" in Ontario or elsewhere, Ms. Matthews said. "We're doing our best to make sure he gets the care he deserves."

The Reids' odyssey began when Liam was five months old and doctors in Toronto operated unsuccessfully on his right eye. But an operation a few weeks later by Michael Trese, chief of vitreoretinal surgery at William Beaumont Hospital in Royal Oak, Mich., was successful: Liam now has light perception in his left eye, and he can see light coming through doors and windows. While he will never have total sight, the aim is for low vision that will open the door to future therapies.

If the procedure hadn't been performed, Dr. Trese said, Liam wouldn't be in this position; the majority of children with this condition lose their vision by the age of four. The disease is so rare that Dr. Trese said doctors in Ontario wouldn't likely be able to offer the same specialized treatment for Liam.

Still, OHIP refused to pay and the Health Services Appeal and Review Board denied the Reids' appeal – even though the insurer has funded a handful of out-of-country PFVS/Norrie's treatments in the past. Perry Brodkin, a health lawyer representing the Reids, is trying to get documents on other cases from OHIP, so he can then request a review from the appeal board.

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The Reids have applied to OHIP again to fund a July appointment with Dr. Trese; they couldn't afford to take Liam to an appointment in April. Each visit costs about $5,000. In the wake of Mr. McGuinty's announcement, Ms. Reid hopes, Liam will be approved this time.

"I definitely have hope. Could it be over? Could I finally get back to my family? I won't be convinced until I get that official notification from the ministry," Ms. Reid said. "We are beaming today. Maybe we're even a little bit closer to an end to this three-year nightmare."

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