Ottawa family struggles to access lifesaving medication for daughter with rare form of epilepsy

An Ottawa family is in desperate need of help, searching for a drug that could save the life of their four-year-old daughter.

Zara Wathra suffers from a rare and severe form of epilepsy, which could cause her to have a fatal seizure at any time.

Zara’s condition has worsened over the past month – she has frequent seizures and her parents are struggling to get the help they need. The family have made countless trips to the hospital in hopes of a solution, but they now feel they cannot access the only option they have left.

Since her earliest childhood, Zara has suffered from a severe form of epilepsy.

“She has lifelong uncontrollable seizures that are very resistant to medication,” said Zara’s mother, Tia Wathra.

It’s called Dravet Syndrome, and for Zara and her family, it’s been a four-year battle with no end in sight.

“It’s been four very difficult 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 say to myself: ‘Is -Is she having another seizure?’ I often feel very depressed,” said Zubair Wathra, Zara’s father.

Over the past month, Zara’s condition has worsened, now she suffers from several seizures a day.

“These last three weeks, all these tantrums she’s had, she doesn’t talk as much anymore, she’s lost a lot of her personality,” Tia said.

Her family tried several treatments, but all of them failed. Now their hopes are pinned 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 medicine. I wish she had this medicine and hopefully improve her quality of life,” Zubair said.

In an email to the family obtained by CTV News, a representative from the hospital pharmacy said, “We are currently only processing one request at a time as this is a brand new process for us”.

“Once we get more comfortable with the application process, we hope to be able to process more applications at once.”

Zara’s mum said: “We feel like we don’t have a lot of time to wait until they feel comfortable applying for her. We think it’s a right for her to have a request for a drug that could save his life.”

The family worries, the longer they are forced to wait, the worse Zara’s condition is likely to get.

“Seizures cause brain damage, there is a risk of death from seizures. It’s hard to say these things but the risk is there,” Zubair said.

“Every time we go to bed at night, we don’t know for sure if Zara will wake up,” Tia added.

CTV News Ottawa has contacted CHEO multiple times for official comment, but has not received a response as of this article’s publication.

This means that this family is still waiting without delay, hoping to gain access to the drug that could save their daughters’ lives before it’s too late.

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