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
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.
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.
2 teens charged in Halifax homicide: police
Two teenagers have been charged with second-degree murder in connection to an alleged homicide near the Halifax Shopping Centre earlier this week.
'Deep ignorance': Calls for Manitoba trustee to resign sparked after comments about Indigenous people and reconciliation
A rural Manitoba school trustee is facing calls to resign over comments he made about Indigenous people and residential schools earlier this week.
12-year-old hippo in Japan raised as a male discovered to be a female
When Gen-chan arrived at a zoo in Japan in 2017, no one questioned whether the then-five-year-old hippopotamus was a boy. Seven years later, zoo staff made a surprising discovery: Gen-chan, now 12, was female.
Here's why Harvey Weinstein's New York rape conviction was tossed and what happens next
Here's what you need to know about why movie mogul Harvey Weinstein's rape conviction was thrown out and what happens next.
Legendary hockey broadcaster Bob Cole dies at 90: CBC
Bob Cole, a welcome voice for Canadian hockey fans for a half-century, has died at the age of 90. Cole died Wednesday night in St. John's, N.L., surrounded by his family, his daughter, Megan Cole, told the CBC.
Humanist group threatening to sue Vancouver over council prayers
The B.C. Humanist Association has threatened legal action against the City of Vancouver for allowing prayers at council, following a similar warning issued earlier this month to a smaller community on Vancouver Island.
LHSC performs a Canadian first in robot-assisted direct lateral spine surgery
Spine surgery may never be the same for people with chronic back pain and other physical ailments.