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
B.C. tenants evicted for landlord's use after refusing large rent increase to take over neighbouring suite
Ashley Dickey and her mother rented part of the same Coquitlam duplex in three different decades under three different landlords.
Mountain guide dies after falling into a crevasse in Banff National Park
A man who fell into a crevasse while leading a backcountry ski group deep in the Canadian Rockies has died.
Expert warns of food consumption habits amid rising prices
A new survey by Dalhousie University's Agri-Food Analytics Lab asked Canadians about their food consumption habits amid rising prices.
MPP Sarah Jama asked to leave Ontario legislature for wearing keffiyeh
MPP Sarah Jama was asked to leave the Legislative Assembly of Ontario by House Speaker Ted Arnott on Thursday for wearing a keffiyeh, a garment which has been banned at Queen’s Park.
Charlie Woods, son of Tiger, shoots 81 in U.S. Open qualifier
Charlie Woods failed to advance in a U.S. Open local qualifying event Thursday, shooting a 9-over 81 at Legacy Golf & Tennis Club.
Ex-tabloid publisher testifies he scooped up possibly damaging tales to shield his old friend Trump
As Donald Trump was running for president in 2016, his old friend at the National Enquirer was scooping up potentially damaging stories about the candidate and paying out tens of thousands of dollars to keep them from the public eye.
Here's why provinces aren't following Saskatchewan's lead on the carbon tax home heating fight
After Prime Minister Justin Trudeau said the federal government would still send Canada Carbon Rebate cheques to Saskatchewan residents, despite Saskatchewan Premier Scott Moe's decision to stop collecting the carbon tax on natural gas or home heating, questions were raised about whether other provinces would follow suit. CTV News reached out across the country and here's what we found out.
Montreal actress calls Weinstein ruling 'discouraging' but not surprising
A Montreal actress, who has previously detailed incidents she had with disgraced Hollywood producer Harvey Weinstein, says a New York Court of Appeals decision overturning his 2020 rape conviction is 'discouraging' but not surprising.
Caleb Williams, Jayden Daniels and Drake Maye make it four NFL drafts with quarterbacks going 1-3
Caleb Williams is heading to the Windy City, aiming to become the franchise quarterback Chicago has sought for decades.