The nine-year-old boy’s doctors say this treatment is the best option for his rare, possibly fatal, brain condition. But B.C. won’t pay for it.
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Natasha Hepburn has been living for years with the knowledge that her son Nathan needs treatment for the lesion on his brain, or he’s going to eventually have a severe hemorrhage that will either end his life or leave him disabled.
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After searching since 2021 when Nathan was diagnosed, Hepburn says she has found a procedure that could get rid of her son’s brain arteriovenous malformation, or AVM, which leaves him at severe risk of a brain bleed.
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But despite an appeal from Nathan’s medical team, the province won’t fund the costs.
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Now nine, Nathan has undergone treatment at B.C. Children’s Hospital and SickKids in Toronto but radiation hasn’t worked and his medical team has informed the family that the only option that may be successful is a new procedure by a Dr. Rene Chapot at the Alfred Krupp Krankenhaus Centre in Germany.
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In March, Nathan was denied funding by the province’s medical services board to help cover the trips on the basis that there are treatment options available in Canada and the treatment offered in Germany is deemed experimental.
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“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, herself a registered nurse.
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“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.”
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Treatments cost $60,000 each, says Hepburn, not including any additional expenses such as food, flights and hotels.
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She said that Nathan has already undergone one treatment and the three-week stay in Essen, Germany, in April, plus some complications, meant that the family was forced to spend more than $80,000 on that trip.
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They have raised $107,000 through a GoFundMe page, but Nathan will need up to five more treatments in Germany and the family doesn’t have the funds to cover it. Much of what they’ve raised so far went toward the first treatment.
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Last month, Faizal Haji, a pediatric neurosurgeon at B.C. Children’s, sent a letter to the board appealing their decision to deny funding, stating that he believes the board is wrong that there are treatment options for Nathan in Canada, and that the treatments conducted by Dr. Chapot have already shown some success.
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“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.
