The B.C. government has agreed to provide one-time funding for a North Vancouver boy with a rare disease to receive treatment overseas, following months of advocacy from his family. Nathan Hepburn was diagnosed with an extremely rare brain arteriovenous malformation, or AVM—a diagnosis that could lead to lethal brain hemorrhaging. There is no cure available in North America, but through research and collaborating with experts overseas, the boy’s mother Natasha Hepburn found a doctor in Germany who pioneered treatment. It’s something the family would not have been able to do without GoFundMe donations, raising $195,000 before the stepped up in provide $400,000. ‘Exceptional and one-time basis’ In a letter to the boy’s mother Monday, then-health-minister Ravi Kahlon said: “It is clear that you have worked tirelessly to find the best possible care for Nathan.” “The government has a responsibility to ensure public dollars are used responsibly and that publicly funded treatments are supported by appropriate evidence,” it continues. “At the same time, we recognize that medical care continues to evolve, and that families facing serious and complex medical conditions may seek innovative treatment options when pursuing the best possible outcomes for their loved ones.” The NDP government is providing the funding on an “exceptional and one-time basis,” to be used for medical costs associated with Nathan’s remaining AVM treatments. This does not cover travel, accommodation, meals or other non-medical expenses. The government is now backtracking on its decision to deny funding due to the treatment being experimental, after the decision was appealed in May by Nathan’s local neurology team. “Gratitude, relief and disbelief all at once,” Natasha Hepburn said after receiving the life-changing letter. “As a mother, I don’t know why this decision was made, but I will never forget that.” Kahlon has decided not to seek re-election, but made the decision while he was still in cabinet. “He shared with me in confidence that this would be his last few days as minister of health but he said the las thing he did was sign off on Nathan’s funding,” said Hepburn. ‘Political reason’ for funding? Former B.C. Conservative health critic Anna Kindy, who has advocated for support for the Hepburn family, said she’s happy to learn of the funding—but questioned the timing of the decision. “Are they funding for a political reason or are they funding for the reality of actual treatment for a life-saving condition,” Kindy said Wednesday. She also wondered if the next rare case will get the same treatment. “They fall through the cracks, so I think we’re having a system in crisis that’s failing especially for vulnerable people without people to advocate for them,” she said. Still, for Hepburn, a mother does not have to lie awake at night worried for her child’s life. “Thank you for believing that his life was worth fighting for and thank you for helping give Nathan the chance to keep moving forward,” she said.
