Being able to get an expensive drug has helped Morgan Buyaki start planning to live. (submitted/Morgan Buyaki)

By Susan McNeil

Rare disease

Medication gives Nipawin woman best oxygen levels of her life

Feb 17, 2023 | 5:00 PM

For the first time in her life, Morgan Buyaki can almost breathe normally.

A life-saving medication that the 23-year-old spent months convincing the province to pay for has made a world of difference and changed her perspective. She can now breathe with oxygen levels at 93 per cent.

“Back when I was dying and I really thought there was no hope, I stopped making plans. I just kind of became a shut-in. I wasn’t really living because it was painful and there was no point to it, but now, with this, I have started making plans again,” she said.

To get her eosinophilic granulomatosis with polyangiitis (EGPA) under control to the point she did not face a 75 per cent chance of dying, Buyaki needed a monthly dose of 300 mg of a drug called NUCALA.

The province said it would pay for 100 mg a month. A one-month regime of NUCALA costs up to $9,000 and that was more than Buyaki and her family could handle.

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Her mother, April McIvor, was not willing to accept the high likelihood that her daughter would die, however.

She started a GoFundMe, had a fundraising auction, and went on social media looking for help– which she found. A lot of donations came in from Nipawin and the surrounding area, but Buyaki said she got money and donations from as far away as the United States.

“We actually raised a lot of money and that’s how we were able to buy my first round of the 300 grams of NUCALA,” Buyaki said.

She responded well to the medication and now has the best function in her lungs that she has ever had in her life. The drug improves the odds from a 25 per cent chance of living to 90 per cent.

“The symptoms are managed and currently I’m no longer actively dying from it, so it’s amazing,” said Buyaki. “It has changed every aspect of my life. I’m even sleeping and I was getting nightmares and those have gotten better.”

The fact that her monthly treatments will be covered for the next four years by the province and the two fundraisers means she can now look forward.

“It’s enough that we’ll be going to the Mayo Clinic soon and that wouldn’t have been possible without everyone. I’m deeply thankful for that,” she said.

She can go up and down stairs and will even be able to walk her dogs outside this summer.

At the Mayo Clinic, they will help her maintain the function of her lungs and they employ specialists that can help with the EPGA and other health issues she has.

The inflammation caused by the disorder can attack any part of her body, said April McIvor, Buyaki’s mother. At first, it was mainly attacking her lungs, but it is also attacking her digestive system and Mayo Clinic doctors can help with that part of the disease.

Not only has been on the NUCALA allowed her to live well in the present, but it has also given Buyaki a future.

“I have started making plans. I revisit plans from the past that I had and I’m also making new ones. I want to go to school to get my cosmetology degree. I want to go out there more, start dating and start making new friends,” she said.

When her health improves enough, she will also start looking for some part-time work.

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susan.mcneil@pattisonmedia.com