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UBC student marks graduation 4 years after potentially fatal diagnosis

Click to play video: 'Fatal disease survivor graduates from UBC' Fatal disease survivor graduates from UBC
Four years ago, a young woman wasn't sure she'd be alive today let alone graduating from UBC but she is - and it's truly an amazing accomplishment. John Hua now with Shantee Anaquod's story, including and how Global News helped her achieve her goal – Jun 2, 2021

It was a moment that just four years ago seemed almost unimaginable for Shantee Anaquod.

Beaming and decked out in cap and gown, the 26-year-old celebrated her graduation with a degree in anthropology from the University of British Columbia on Wednesday.

But in 2017, Anaquod wasn’t sure she would even live this long — never mind complete a university degree.

Read more: It costs $750K per year to treat her rare disease, and B.C. doesn’t cover the cost

Back then, the young student was confined to a hospital bed as her body fought atypical hemolytic uremic syndrome (aHUS), a rare autoimmune disease that is characterized by renal (kidney) failure.

“Honestly it seems like a flash-forward to be here now, and it was like a figment of my imagination that it happened,” she told Global News.

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“But I do get these flashback memories like, no that was real and it happened. I just did it.”

Doing it was about more than beating a disease. Anaquod and her mother Jennifer had to fight the provincial government, and won.

Click to play video: 'Government may approve expensive drug for rare disease' Government may approve expensive drug for rare disease
Government may approve expensive drug for rare disease – Nov 20, 2017

That’s because aHUS can be treated with a drug called Soliris. The Health Canada-approved medication came with massive price tag, which wasn’t covered by the B.C. government.

“I remember the moment the doctor … told us it was a $780,000 medication and it wasn’t funded, and that moment of saying, ‘That’s OK, we’ll figure it out.’ He looked at me like I was crazy,” Jennifer said.

“It was kind of mind-boggling, because in Canada we’re told we have free health care. So at first I wasn’t worried,” Shantee said.

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“And then I got the news, very shocking, kind of had to take that all in, and then think what can I do about it? What do people do when you’re told no.”

The family refused to take no for an answer, contacting Global News and going public with Shantee’s story.

Click to play video: 'UBC student makes desperate plea to provincial government to help save her life' UBC student makes desperate plea to provincial government to help save her life
UBC student makes desperate plea to provincial government to help save her life – Nov 11, 2017

After she was denied coverage twice, amid a groundswell of public support, the provincial government agreed to cover the drug on a case-by-case basis.

Within six months Shantee was off dialysis, and by the following year she was back to a semblance of normalcy. She still needs regular doses of Soliris, however, and her case must still be regularly reviewed by the province.

Earning her diploma was a powerful motivator in her fight for recovery she said.

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Seeing her daughter achieve it, it was hard for Jennifer to hold back tears.

Read more: B.C. government approves coverage of expensive drug Soliris on case-by-case basis

“There’s really no words. Just so ecstatic. I didn’t think we’d ever see it, even afterwards. There was times I wondered if she’d make it through,” she said.

“Her determination, her perseverance, her passion, all of that was just… I can’t imaging doing that now, let alone as a young adult.”

Now moving on to life after university, Shantee says the lessons she learned about herself — and about the world — have inspired her to be a change maker.

“I think it means I’m meant to be here. I think I have a purpose, and this kind of shows that everybody has a purpose and you have to fight to get there,” she said.

“Seeing how hard you can push and make a change, really has created a new narrative for my life that I can make a difference and I can push forward … Things like this are happening every day and nobody knows about it.”

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