Ottawa family struggles to access lifesaving drugs for daughter with rare form of epilepsy
An Ottawa family is desperate for help, searching for a potentially lifesaving medication for their four-year-old daughter.
Zara Wathra suffers from a rare and serious form of epilepsy, which could send her into a fatal seizure at any moment.
Zara's condition has worsened in the last month – she has frequent seizures and her parents are struggling to get the help they need. The family has made countless trips to the hospital hoping for a solution, but they feel now they cannot access the one option they have left.
Since infancy, Zara has dealt with a severe form of epilepsy.
"She has lifelong uncontrollable seizures that are very drug resistant," said Zara’s mother, Tia Wathra.
It is called Dravet Syndrome, and for Zara and her family it has been a four year battle with no end in sight.
"It's been a very difficult four years. It's hard to go to work thinking about what's going on at home, every time the phone rings and I see my wife's number I'm thinking, 'Is she having another seizure?' I feel very depressed a lot of times," said Zubair Wathra, Zara’s father.
In the last month, Zara's condition has worsened, now she suffers several seizures a day.
"The last three weeks all these seizures she's been having, she's not talking as much anymore, she's lost a lot of her personality," said Tia.
Her family has tried multiple treatments but all of them have failed. Now their hopes rest on a single drug, but efforts to access it through CHEO have been unsuccessful.
"It's very frustrating, we just want her to have access to this medication. I'd like her to have this medication and hopefully make some improvements in her quality of life," Zubair said.
In an email sent to the family obtained by CTV News, a representative from the hospital's pharmacy said, "Currently, we are only processing one application at a time because this is a very new process to us."
"Once we are more comfortable with the application process, we will hopefully be able to process more applications at a time."
Zara’s mother said, "We feel like we don't have a lot of time to wait for them to be comfortable applying for her. We think that it's a right for her to have an application for a potentially lifesaving drug put in for her."
The family is worried the longer they are forced to wait, the worse Zara's condition may become.
"The seizures cause damage to the brain, there's risk of death from seizures. It's hard to say these things but the risk is there," said Zubair.
"Every time we go to bed at night, we don't know for sure if Zara will wake up," added Tia.
It means this family is still waiting without a timeline, hoping for access to the drug that could save their daughters life before it is too late.
CTVNews.ca Top Stories
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
Decoy bear used to catch man who illegally killed a grizzly, B.C. conservation officers say
A man has been handed a lengthy hunting ban and fined thousands of dollars for illegally killing a grizzly bear, B.C. conservation officers say.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
OPP responds to apparent video of officer supporting anti-Trudeau government protestors
The Ontario Provincial Police (OPP) says it's investigating an interaction between a uniformed officer and anti-Trudeau government protestors after a video circulated on social media.
An emergency slide falls off a Delta Air Lines plane, forcing pilots to return to JFK in New York
An emergency slide fell off a Delta Air Lines jetliner shortly after takeoff Friday from New York, and pilots who felt a vibration in the plane circled back to land safely at JFK Airport.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Loud boom in Hamilton caused by propane tank, police say
A loud explosion was heard across Hamilton on Friday after a propane tank was accidentally destroyed and detonated at a local scrap metal yard, police say.