Families Turn to GoFundMe as Teen’s Only Hope Remains an Expensive Medication
“We pretty much had no issues with her. She was like a poster girl growing up,” Noel Samson said of his daughter, Emilie.
A Life Changed in an Instant
The 19-year-old from Saskatchewan had always been an active and bright young woman – a dedicated dancer, a good student, and a kind soul, according to friends and family. But last year, just a month before she was set to graduate high school, Emilie’s world flipped upside down. Doctors discovered three life-threatening, noncancerous tumors on her brainstem and spinal cord.
Complicating matters, Emilie was also diagnosed with hydrocephalus, a condition characterized by a buildup of fluid on the brain.
“She lost her mobility, she lost some of her eyesight, and we have been back and forth to the hospital since August,” Emilie’s mother, Michelle Samson, shared.
Surgery was performed, but the tumor on Emilie’s brainstem proved inoperable. Subsequent radiation treatments also proved unsuccessful.
Desperate for a Treatment, Facing High Costs
Emlie’s parents now believe her only hope lies in a drug called Belzutifan. However, the medication comes with a staggering price tag: $23,000 per month.
Doctors believe Emilie’s tumors may carry a mutation connected to Von Hippel-Lindau (VHL) syndrome, although genetic testing has shown she does not have the disorder. Confusing things further, a biopsy to confirm the diagnosis is out of the question; it would be a fatal procedure in Emilie’s case.
Despite the dire circumstances, the provincial government has refused to cover the cost of Belzutifan because there is no official VHL diagnosis. With each month costing nearly the equivalent of a year’s salary, the financial burden is immense.
Noel and Michelle have made tremendous sacrifices. They have both given up their full-time jobs to care for their daughter, dividing their time between their home near Tisdale and Saskatoon, where Emilie receives treatment.
Turning to the Community for Support
A GoFundMe page was created to help the Samsons afford the life-saving medication. To date, over $90,000 has been raised – a testament to the community’s overwhelming support.
“We’re really thankful and grateful for the people that have stood beside us financially and emotionally,” Noel expressed.
While the donations bring hope, the uncertainty about the future weighs heavily on the family. If Belzutifan proves effective, Michelle is hopeful the provincial government will step in to assist with future treatment costs
Waiting and Hoping for a Miracle
Minister of Health Jeremy Cockrill stated he was unaware of Emilie’s case but pledged to look into the matter. “See where we’re at with that specific drug in terms of adding it to the formulary but happy to have my office do some more research and find out what’s going on,” he commented.
Emilie is scheduled to receive her first dose of Belzutifan next week. As they wait, her parents cling to hope, their hearts brimming with gratitude for the outpouring of community support. For everyone involved, the next few months will be filled with a mix of anxiety and unwavering hope that this expensive medication can offer Emilie a chance at a healthy future.
