Sask. couple struggles to pay for daughter's potentially lifesaving medication

A Saskatchewan couple is hoping a last-resort medication can save their daughter’s life, but the treatment is expensive.

Friends and family describe 19-year-old Emilie Samson as an avid dancer, proficient student and a kind person.

“We pretty much had no issues with her. She was like a poster girl growing up,” her father Noel Samson said.

Emilie’s world was turned upside down last year. A month before her high school graduation, doctors found three life-threatening, noncancerous tumors on her brainstem and spinal cord. She also has hydrocephalus, a build up of fluid on her brain.

Doctors performed surgery, but found the tumour on her brainstem was inoperable. She then underwent radiation, which was unsuccessful.

“She lost her mobility, she lost some of her eyesight, and we have been back and forth to the hospital since August,” her mother Michelle Samson said.

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The Samsons say Emilie’s last hope is a drug called Belzutifan, a medication that costs $23,000 a month, and she needs it for at least three months to see if it’s effective.

Belzutifan is used to treat adults with Von Hippel-Lindau (VHL) syndrome. While genetic testing shows Emilie does not have the disorder, her medical team believes her tumors may carry the mutation. However, doctors can only confirm the diagnosis with a biopsy, which would be a fatal procedure in Emilie’s case.

The Samsons say the provincial government will not cover the cost of the medication, because there is no official VHL diagnosis.

Noel Samson says the costs of the medication adds to the financial strain. Both he and Michelle have given up their full-time jobs to support their daughter and split their time between their home near Tisdale and Saskatoon, where she’s receiving care.

A GoFundMe page was created to help the Samsons pay for the medication. Currently, more than $90,000 has been donated.

Michelle Samson says if the medication is effective, she’s hoping the province will help fund future treatments.

Minister of Health Jeremy Cockrill said he’s not aware of Emilie’s case, but said he will have his office look into it.

“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,” Cockrill said.

For now, the Samsons are thankful for the support they've received through fundraising and from family and friends.

 “We're really thankful and grateful for the people that have stood beside us financially and emotionally,” Noel said.

Emilie Samson is expected to get the first round of the medication next week.