'The fear is always there': Mother urges B.C. schools to bring back vital seizure medication

A Surrey mother says she recently received notice that her son’s school will no longer carry or administer the drug Midazolam in the case of an emergency, which she says could help prevent serious injury or even death.

"He was discharged from the program effective immediately starting March 31," said Stephanie Vazquez, whose seven-year-old son Noah lives with a rare, incurable condition called Sterge-Weber syndrome.

"So the idea of him being at school for six hours a day with no rescue medication is terrifying."

A main symptom of the condition is seizures. Vazquez says her son’s already experienced around a hundred in his life, with some lasting upwards of one hour.

"The fear is always there," said Vazquez, who says she never leaves home without Midazolam.

Vazquez says Noah hasn’t had a seizure in years but says when they've happened in the past, they've been unpredictable.

Over the past few weeks, several parents from around the province have shared their personal stories with CTV News on how the policy change has impacted their lives. The policy states that if their child hasn’t had a seizure lasting longer than two minutes in the past 12 months, school staff will no longer be able to administer Midazolam. Instead, staff will provide basic first aid and call 911 and the child’s parents.

"It doesn’t seem like anyone’s willing to do anything at this point," said Michelle Gaudet, a friend of Vazquez' whose son also suffers from the rare condition.

Gaudet shared her story with CTV News in April.

Since speaking with CTV News, Gaudet has sent letters to several officials including her local MLA, and recently spoke of her concerns at a Chilliwack School Board meeting.

After hearing her story, the school board penned a letter to the ministers of health and education calling for a review of its current policy.

Meanwhile, Vazquez launched an online petition which so far has more than 15,000 signatures.

"All I want for my son is access to a safe education," said Vazquez. "I think he deserves it, just like every other child deserves it."

If nothing changes by the start of the next school year, both Vazquez and Gaudet say they plan to pursue legal action.