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
CRA no longer requiring 'bare trust' reporting in 2023 tax return
The Canada Revenue Agency announced Thursday it will not require 'bare trust' reporting from Canadians that it introduced for the 2024 tax season, just four days before the April 2 deadline.
NEW More unauthorized products for skin, sexual enhancement, recalled: Here are the recalls of this week
Health Canada and the Canadian Food Inspection Agency recalled various items this week, including torches, beef biltong and unauthorized products related to skin care and sexual enhancement.
Where is the worst place for allergy sufferers in Canada?
The spring allergy season has started early in many parts of Canada, with high levels of pollen in some cities already. Experts weigh in on which areas have it worse so far this season.
Do these exercises for core strength if you can't stomach doing planks
Planks are one of the most effective exercises for strengthening your midsection, as they target all of your major core muscles: the transverse abdominis, rectus abdominis, external obliques and internal obliques. Yet despite the popularity of various 10-minute plank challenges, planking is actually one of the most dreaded core exercises, according to many fitness experts.
Polar ice is melting and changing Earth's rotation. It's messing with time itself
One day in the next couple of years, everyone in the world will lose a second of their time. Exactly when that will happen is being influenced by humans, according to a new study, as melting polar ice alters the Earth’s rotation and changes time itself.
Grandparent scam: London, Ont., senior beats fraudsters not once, but twice
It was a typical Tuesday for Mabel Beharrell, 84, until she got the call that would turn her world upside down. Her teenaged grandson was in trouble and needed her help.
Sunshine list: These were the Ontario public sector's highest earners in 2023
Ontario released its annual sunshine list Thursday afternoon, noting that the largest year-over-year increases were in hospitals, municipalities, and post-secondary sectors.
NEW 'Godzilla x Kong: The New Empire': A crowd pleaser that turns it up to 11
Hot on the heels of last year's 'Godzilla Minus One' comes 'Godzilla x Kong: The New Empire,' the first ever Academy Award winner in the giant reptile's decades-long film career.
Deaths of 4 people on Sask. farm confirmed as murder-suicide
The deaths of four people on a farm near the Saskatchewan village of Neudorf have been confirmed a murder-suicide.