Natasha Hepburn says overseas treatment is helping her nine-year-old son Nathan battle an extremely rare brain condition, but the family continues to rely on donations while waiting to learn whether the province will help pay for it. After Nathan was diagnosed with arteriovenous malformation, or AVM, a condition that could lead to lethal brain hemorrhaging, his family was told there were no safe treatment options available in Canada. Through research and collaboration with experts overseas, Hepburn found a doctor in Germany who pioneered a treatment. Nathan has now undergone two treatments in Germany, the latest in August. “We’re halfway towards a cure, and two large draining veins and aneurysms that had formed in the interim were also treated,” explains Hepburn. It’s something the family would not have been able to do without donations, with an online fundraiser garnering $195,000 so far. Hepburn says the two treatments cost roughly $140,000, leaving the family with $55,000 to cover his third treatment—not including flights, accommodation and other travel expenses. The doctors say the results have been life changing and 50 per cent of his AVM has now been treated. “This time he didn’t suffer a lot of symptoms. He, of course, had some, but with regard to the location and how dangerous it is, he is doing very well,” explains Dr. Ahmed Ayad, Nathan’s neurologist at Alfried Krupp Hospital in Germany. Dr. Rene Chapot, head of the Department of Neuroradiology at the hospital, has been working towards a cure for Nathan, utilizing innovative techniques like curative transvenous embolization. “The only solution is to treat by the veins, and our experience shows that doing this treatment by the veins enables us to get a cure,” Chapot explains. “That’s why we’re going to proceed until we achieve a cure.” He adds that the treatment was invented 22 years ago but is not a well-established method because of how rare AVM is. “We have been doing this treatment over 1,000 times and we treat a lot of patients that have AVM and cannot be treated or cured in any other way.” Still, the B.C. Ministry of Health has not provided any funding to the Hepburn family. In a statement to CTV News, the Ministry says they can’t go into details of the case due to confidentiality, but a “review of the application is currently underway.” The same response was given in June when CTV News first reported on Nathan’s case. Hepburn says the province told her that her son’s treatment is experimental, and that they don’t fund experimental treatment. She says her family’s request for out-of-country funding was denied in March 2026. “It poses a significant risk to his life, and it’s just very difficult for me to understand how it could be incorrectly labelled as experimental and unproven when we have the proof right here in my own child that it is working,” she states. Inequitable access to Health care Letters of appeal have been written to the ministry from B.C. Children’s Hospital, the B.C. Nurses’ Union and the Canadian Organization for Rare Disorders. CORD says the organization has worked closely with provincial and federal governments to advocate for equitable access to specialized care for people living with rare disorders. The organization also says B.C.’s Out-of-Country Health Services Funding program exists to ensure that patients are able to receive medically necessary care when the technology or treatment cannot be provided within the province. “Cases such as Nathan’s highlight an important principle in the care of people living with rare disorders,” CORD CEO Durhane Wong-Rieger wrote in a letter to the ministry. “Because these conditions affect relatively few patients, expertise is often concentrated in a small number of international centres. Patients should not be disadvantaged simply because the expertise they require is located outside their home province or country.” B.C. Conservative health critic Anna Kindy says the province’s lack of a response is ‘unacceptable’ for the family and for British Columbians. “This is an urgent health care matter and what they are asking for is an answer to cover an evidence-based treatment that isn’t offered here. I can’t see why they haven’t answered. To me that’s unacceptable,” says Kindy. She hopes the Ministry of Health will fund Nathan’s third round of treatment, set to happen in December. Hepburn says she would not have been able to fund her son’s treatments without donations from the community and is urging the province to step up before it’s too late. “What’s going to happen to my child? Is he going to lose his life because of funding when a cure is available and working for him?”
