Province approves $400,000 for North Vancouver boy's rare brain disorder treatment in Germany
Health Minister Ravi Kahlon announced approval of funding for Nathan Hepburn's specialized arteriovenous malformation treatment at a German clinic where surgery was not an option in Canada.
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North Vancouver mother Natasha Hepburn has won provincial approval for $400,000 to fund her son Nathan's specialized brain treatment at a clinic in Germany — reversing an earlier rejection and giving the nine-year-old access to a procedure that doesn't exist in North America.
Health Minister Ravi Kahlon announced the approval just before the provincial election was called last month. Nathan has an arteriovenous malformation (AVM) in his thalamus, a rare condition where abnormal blood vessels can rupture without warning, risking brain damage or death. The condition affects less than one per cent of the population.
Nathan's symptoms began at age five with blank staring and focal seizures, diagnosed by MRI. Doctors in Canada explored three treatment options — surgery to remove the vessels, radiation, and medical glue closure through an artery — but Nathan's malformation lay too deep in his brain for surgery. Radiation caused serious complications. Canadian doctors told the family they had nothing further to recommend.
That led the family to Dr. Rene Chapot in Germany, who pioneered a technique using medical glue delivered through veins rather than an artery — a method unavailable in Canada. Medical journals report a cure rate of more than 90 per cent for the Chapot technique. The family crowdfunded $70,000 for the first treatment in March, which successfully treated one-third of Nathan's malformation. Up to five total treatments may be needed for a full cure.
Hepburn, a registered nurse, appealed after the province initially rejected the funding request, characterizing the treatment as "experimental." She disputed that framing. "I have always respectfully disagreed with that characterization because this was never an unproven or experimental treatment," she told North Shore News. "This is a highly specialized treatment that's being performed at a specialized centre in Europe. Because the disease is so rare, there's not many centres around the world that can treat it because there's not enough cases to go around."
Hepburn and Nathan's doctors' appeal succeeded. The province approved $400,000 — $70,000 per treatment — with a second treatment completed in August.
How many treatments will the $400,000 cover, and what is the timeline for the remaining therapies?
Will the province cover additional treatments beyond these five if required?
We'll update this story as answers emerge.
The facts
How much did the province approve for Nathan Hepburn's treatment?
$400,000 was approved, allocated at $70,000 per treatment for Nathan Hepburn's specialized brain treatment in Germany.
What is Nathan's condition?
Nathan Hepburn has an arteriovenous malformation (AVM) in his thalamus, a rare condition where abnormal blood vessels can rupture without warning, risking brain damage or death.
Why couldn't Nathan receive treatment in Canada?
Nathan's arteriovenous malformation lay too deep in his brain for Canadian surgical removal, radiation caused serious complications, and the specialized glue delivery technique through veins — which Dr. Rene Chapot pioneered in Germany — is unavailable in North America.
