Vancouver boy’s rare-disease treatment shows progress but receives no provincial funding

Natasha Hepburn says treatment in Germany is helping her nine-year-old son Nathan fight an extremely rare brain condition, but the Vancouver family is still relying on donations while awaiting a decision on provincial funding.

Nathan was diagnosed with arteriovenous malformation, or AVM, a condition that can cause fatal brain hemorrhaging. His family was told there were no safe treatment options available in Canada. After researching the condition and consulting overseas experts, Hepburn found a German doctor who pioneered a treatment.

Nathan has received two treatments in Germany, most recently in August. Hepburn says he is halfway toward a cure, and that two large draining veins and aneurysms that formed in the interim were also treated. An online fundraiser has collected $195,000. The first two treatments cost about $140,000, leaving $55,000 for a third treatment, excluding flights, accommodation and other travel costs.

Dr. Ahmed Ayad, Nathan’s neurologist at Alfried Krupp Hospital in Germany, says the results have been life-changing and about 50 per cent of Nathan’s AVM has been treated. He said Nathan experienced fewer symptoms after the latest procedure and is doing very well given the location and danger of the condition.

Dr. Rene Chapot, head of the hospital’s Department of Neuroradiology, is using techniques including curative transvenous embolization in an effort to cure Nathan. Chapot said treatment through the veins is the only solution and that the hospital’s experience indicates it can achieve a cure. He said the treatment was developed 22 years ago, but has not become well established because AVM is rare. The team has performed it more than 1,000 times and treats many AVM patients who cannot be treated or cured in another way.

The B.C. Ministry of Health has not provided funding to the Hepburn family. In a statement to CTV News, the ministry said it could not discuss details because of confidentiality, but that the application is under review. It gave the same response when CTV News first reported Nathan’s case in June.

Hepburn says the province considers her son’s care experimental and does not fund experimental treatment. She says the family’s request for out-of-country funding was denied in March 2026. She argues that Nathan’s progress shows the treatment is working and should not be classified as experimental and unproven.

B.C. Children’s Hospital, the B.C. Nurses’ Union and the Canadian Organization for Rare Disorders have written appeal letters to the ministry. The organization says B.C.’s Out-of-Country Health Services Funding program is intended to ensure patients can receive medically necessary care when the needed technology or treatment is unavailable in the province. Its CEO, Durhane Wong-Rieger, said rare-disease expertise is often concentrated in a small number of international centres and patients should not be disadvantaged because the expertise they need is outside their province or country.

B.C. Conservative health critic Anna Kindy called the lack of a response unacceptable for the family and British Columbians. She said the family is seeking an answer on funding for an evidence-based treatment unavailable locally, and hopes the ministry will cover Nathan’s third round of treatment, planned for December. Hepburn says community donations have made his treatment possible so far and is urging the province to act before it is too late.