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.