"I miss my son. Four weeks ago was the worst day of my life. Losing him feels like losing a limb."

“It’s like you go from planning the end of your life to planning the rest of your life."

The medicine costs approximately $750,000 a year and can improve a patient’s condition who’s living with aHUS.

The drug became a hot-button issue after 23-year-old Shantee Anaquod went public with her battle to seek coverage.

"It's been kind of moment by moment."

Nadia Saiphoo was planning her funeral before taking Soliris. Within a week, she was able to leave the hospital.

As Jennifer Anaquod watches her daughter's health hang in the balance, the B.C. government is looking into whether it should fund a drug that could potentially save Shantee Anaquod's life.

The costly drug Soliris can help treat UBC student Shantee Anaquod's rare condition, but the province currently doesn't cover it.

There are concerns that the drug is too expensive and that it has unclear benefits.

Patient advocacy groups which get some part of their funding from pharmaceutical companies do have to disclose that information before lobbying the government.