A Saskatchewan couple is hoping a last-resort drug will save their daughter’s life, but treatment is expensive.
Friends and family describe Emily Samson, 19, as an avid dancer, accomplished student and kind person.
“We had almost no problems with her. She was kind of a poster girl growing up,” said her father, Noel Samson.
Emily’s world changed forever last year. A month before her high school graduation, doctors discovered three life-threatening noncancerous tumors in her brain stem and spinal cord. She also has hydrocephalus, which is a buildup of fluid in the brain.
Doctors performed surgery, but the tumor in his brainstem proved inoperable. She then underwent radiation therapy, which was unsuccessful.
“She has lost her motor skills and some of her vision and has been in and out of the hospital since August,” said her mother, Michelle Samson.
The Samsons said Emily’s last hope was a drug called Belzutifan, which costs $23,000 a month and must be taken for at least three months to see if it is effective.
Versutifan is used to treat adults with von Hippel-Lindau (VHL) syndrome. Genetic testing shows that Emily does not have the disease, but her medical team believes her tumor may have a mutation. However, doctors can only confirm the diagnosis with a biopsy, which in Emily’s case would be a fatal procedure.
The Samsons claim the state government will not pay for their treatment because they do not have an official VHL diagnosis.
Noel Samson says the cost of drugs adds to her financial burden. Both he and Michelle quit full-time jobs to support their daughter and split their time between their home near Tisdale and Saskatoon, where their daughter is in care.
a A GoFundMe page has been created This is to help the Samson family pay for medicine. To date, more than $90,000 has been donated.
Michelle Samson said she hopes the state will fund future treatments if the drug is effective.
Health Minister Jeremy Cockrill said he was not aware of Emily’s case but would let authorities investigate.
“Look at where we are in terms of adding that particular drug to the formulation list. But I’m asking my office to do further research to find out what’s going on.” I would like to see that happen,” Cockrill said.
For now, the Samson family is grateful for the support they have received from fundraisers and family and friends.
“We are so grateful to the people who have supported us both financially and emotionally,” Noel said.
Emily Samson is scheduled to receive her first dose next week.
