Mother of 23-year-old Sask. woman with rare disease begs for access to potentially lifesaving medication

"Hi. I am April and Morgan is my daughter. It is a very humbling experience to beg for my daughters life."

These are the opening lines of a lengthy post on a GoFundMe fundraiser for a 23-year-old girl from Nipawin, Sask.

The author is April McIvor, a mother who has had to watch her daughter suffer for years. But she says lately, it's been worse than ever.

Eighteen months ago, Morgan Buyaki was diagnosed with an extremely rare vascular disease called eosinophilic granulomatosis with polyangiitis (EGPA). According to the Cleveland Clinic, EGPA is so rare there are only two to five new cases a year per one million people. It is fatal if untreated.

Prior to the diagnosis, Buyaki battled chronic health issues for many years. Today, Buyaki has to use a walker and oxygen, frequently vomits and has issues with her liver, kidneys and heart. Beyond the pain is the struggle to breathe. This, her mother said, is the hardest part. 

"Even turning over in bed is a problem because she just can't breathe. She's basically drowning on land. It's like she's suffocating," McIvor said.

McIvor is with her daughter, who is nearly always bedridden, all the time. She said that she is often reminded of when Buyaki was a baby. 

"How every few hours they wake up to eat and you hear every little noise," she said, "I wake up multiple times during the night looking in on her to make sure she's still alive." 

McIvor describes Buyaki as an animal lover "to a fault," who raises funds for a senior dog shelter and often takes in strays. Buyaki also loves to journal and write, is a big Stephen King fan, and can make any story interesting with her "wicked sense of humour and sharp wit," said McIvor. 

There is a potential treatment for EGPA, which attacks the body's white blood cells. A medication called NUCALA, or mepolizumab, has been shown to have positive effects for many, although further studies are still being done to fully understand its efficacy and optimal use.

For the treatment, Buyaki would need an injection of 300 ml once a month, according to McIvor, but she said that injection costs between $5,600 and $9,000 per treatment.

"Who can afford that?" McIvor said.

McIvor said she's not just thinking of her own child. She said anyone could fall into similar circumstances.

"It could be somebody else's child or somebody else's mother who, for the same thing, could not afford a lifesaving medication. And I just don't think that in this day and age in this country, Canada — I just don't think it's acceptable. It shouldn't be like that."