On the surface, nine-year-old Nathan Hepburn appears to be a regular, happy, energetic kid.
However, Nathan suffers from an extremely rare and life-threatening brain arteriovenous malformation (AVM), which is an abnormal tangle of blood vessels that puts him at high risk of a potentially lethal brain hemorrhage.
His mother Natasha describes his condition as a “ticking time bomb.”
“Each day that passes is a day closer to when Nathan’s AVM can rupture and my child can lose his life,” she said.
After years of treatment in B.C. and Toronto, Nathan’s condition continued to worsen until his family discovered another option in Germany. He has now undergone two rounds of treatment, and Natasha says the change has been significant.
“His headaches have significantly decreased,” she said. “He is not waking up in the middle of the night screaming in pain anymore.”
Doctors in Germany have told Natasha they are confident they can ultimately cure her son. However, each round costs more than $60,000, and Nathan could need as many as six rounds.
“I can’t sleep at night thinking that his treatment will be delayed and he could lose his life because of funding,” she said.
Natasha had turned to the B.C. government for help but was denied. The province said acceptable medical care is already available in B.C., and it called the German treatment “unproven and experimental.”
Nathan’s neurosurgeon at BC Children’s Hospital recommended the treatment and wrote a letter supporting the family’s appeal for provincial funding.
And now, Natasha is hopeful that the progress Nathan has shown can serve as its own recommendation.
“I’m hoping they can respect the opinions of the very neurosurgical teams here who have indicated this is the right path to go,” she said.
“And we have the proof. My child is the proof that it’s working.”
In an email to CityNews, the Ministry of Health said a review of the application is underway.
Natasha is now left to wait for an answer from the provincial government. She hopes to hear back soon, saying they don’t have the luxury of time on their side.
