Natasha Hepburn has been living for years with the knowledge that her son Nathan needs treatment for the lesion on his brain, or he will eventually have a severe hemorrhage that could end his life or leave him disabled. The nine-year-old boy has a rare brain condition called arteriovenous malformation (AVM), which puts him at severe risk of a brain bleed.
After searching since 2021 when Nathan was diagnosed, Hepburn says she has found a procedure that could eliminate the AVM. However, despite an appeal from Nathan's medical team, the province of British Columbia will not fund the costs.
Treatment Options Exhausted in Canada
Nathan has undergone treatment at B.C. Children's Hospital and SickKids in Toronto, but radiation has not worked. His medical team has informed the family that the only option that may be successful is a new procedure performed by Dr. Rene Chapot at the Alfred Krupp Krankenhaus Centre in Germany.
In March, the province's medical services board denied funding for the trips, stating that treatment options are available in Canada and the German treatment is considered experimental. However, Hepburn, a registered nurse, argues that no acceptable care is available in Canada.
“They looked at him, they had consults with every renowned top-leading clinic in North America, including the Mayo Clinic, UCSF, Stanford, and they said to radiate this lesion again it would cause brain death, like radiation necrosis, and it is not amenable to surgery,” said Hepburn. “Our neurosurgical team told us to go. They endorsed this treatment. They wrote letters of support to the government, but the government declined our request, and is saying acceptable care is available in Canada. What acceptable care? When the neurosurgical teams themselves are telling you they can’t treat this lesion, there’s nothing more that can be done, and without treatment, my son will die.”
Financial Burden on Family
Each treatment costs $60,000, not including additional expenses such as food, flights, and hotels. Nathan has already undergone one treatment during a three-week stay in Essen, Germany, in April. Complications forced the family to spend more than $80,000 on that trip.
The family has raised $107,000 through a GoFundMe page, but Nathan will need up to five more treatments in Germany. Much of the funds raised so far went toward the first treatment. The family does not have the money to cover the remaining treatments.
Medical Team Supports Treatment
Last month, Faizal Haji, a pediatric neurosurgeon at B.C. Children's, sent a letter to the board appealing their decision. He stated that he believes the board is wrong in claiming there are treatment options for Nathan in Canada. He noted that the treatments conducted by Dr. Chapot have already shown some success.
“Given that the treatment strategy that Dr. Chapot has pursued in Nathan’s case has demonstrated some success, and given that there are no other immediate treatment options for Nathan’s AVM that would be recommended and available by Nathan’s care team here in Canada, I believe Ms. Hepburn’s decision to see through the treatment … is reasonable and medically justified,” said Haji in the letter.
The family continues to appeal the funding decision while seeking additional donations to cover the life-saving treatment.
