Babies with rare diseases, protest movements, and COVID-19: the top GoFundMe campaigns of 2020

Lucy and Aryan are seen in photos posted on GoFundMe.com

TORONTO — The top three fundraisers in Canada in 2020 all involved desperate parents attempting to obtain the same rare and expensive medical treatment for their children, according to GoFundMe.

The company released a set of statistics for the end of the year, which coincided with their 10-year anniversary, on Dec. 10, looking at donating habits and the top fundraising campaigns of the year.

GoFundMe also provided CTVNews.ca with a list of the top five campaigns in Canada alone, and the top three had two things in common: spinal muscular atrophy (SMA) and a treatment called Zolgensma.

The company behind the treatment announced Wednesday that Health Canada had approved the Zolgensma for use in Canada.

“Aryan’s Fight Against SMA,” “Life for Lucy - Conquering SMA,” and “Realiser l’impossible ave Nathan” are the names of the GoFundMe campaigns, each telling a similar sad tale about an infant who had SMA and needed treatment.

SMA is a rare neuromuscular disease that causes muscle weakness and atrophy, and can eventually lead to death. Zolgensma is a one-time treatment for the disease which provides a copy of the healthy gene that is missing or non-functioning in the child.

But before Health Canada’s approval this week, the only way Canadians could access the treatment was through a federal special access program, where it cost roughly $2.8 million. It’s unclear at this point how much the treatment will cost in Canada moving forward.

Parents didn’t have the luxury to wait for Health Canada’s approval, as the treatment needs to be taken before patients turn two years.

So they turned to crowdfunding.

As of December, two of the fundraisers had raised more than $5 million between them, while a third had stopped accepting donations before reaching the goal.

An August update on the fundraiser for Aryan Doel, which raised more than $2.8 million, said, "We can't wait to see what the future holds for Aryan and we can't wait for him to get Zolgensma.

“From the bottom of hearts, we want to thank everyone who has supported Aryan in his fight. Without all of you, nothing was possible.”

One of the other babies being fundraised for, Lucy, received Zolgensma in a lottery that the company held to give away doses for free. Her family pledged to donate the funds they had earned to other families who were trying to raise enough money to get Zolgensma for their children, including Eva Batista, whose family had also entered the lottery but failed to receive the treatment.

According to GoFundMe’s statistics, more than 150 million donations were placed through the website in the past 10 years.

In Canada, the most prolific donor gave to 163 different fundraisers in a total of 201 separate donations. Cities in the western provinces dominated the top five most generous cities, with Victoria, B.C., and Kelowna, B.C. taking the top two spots. Kingston, Ont., Saskatoon, Sask., and Calgary, Alberta, took spots three through five.

A spokesperson for GoFundMe told CTVNews.ca in an email that in 2020, more people gave smaller amounts to a higher number of causes, a rise in “microgiving.”

“Even with a small contribution, you can still make a sizable and impactful impression,” they wrote. “In fact, on GoFundMe this year, 70 per cent of all donations were under $50.”

WHAT CROWDFUNDING REVEALS

GoFundMe is one of the most popular places on the Internet to post fundraising campaigns. But while celebrating charitable giving is important, the type of campaigns that the website hosts often shine a light on ways that governments and social safety nets are failing people around the world.

People use crowdfunding sites to raise money for life-saving medications and procedures, for gender confirmation surgeries, for rent, for funerals, for lawyers — often turning to the general public for help after finding no official avenue to receive assistance.

The top five fundraising campaigns for the entire website — not merely the Canadian fundraisers — reflected this need for more governmental support.

America’s Food Fund, a fundraiser working with several organizations that provide food to vulnerable populations, raised more than US$44 million to help out those experiencing more food insecurity as a result of COVID-19, becoming the largest fundraiser in the website’s history in the process.

Two fundraisers in GoFundMe’s total top five were related specifically to COVID-19 itself, raising money for PPE for frontline workers and raising money for food and water for Navajo and Hopi communities stricken with COVID-19.

In lieu of sufficient government aid, average people ask other average people to help.

The other two fundraisers that made the top five list centred around the need for justice for Black people in the U.S. that arose in the wake of George Floyd and Breonna Taylor’s deaths at the hands of white police officers.

In Taylor’s case, that justice was never served — the officers involved in her fatal shooting still have not been charged for their role in her death.

According to the GoFundMe report for the fundraiser for Breonna’s family, “more than 210,000 donations have been made in Breonna’s honor for ongoing legal expenses incurred as Breonna’s family fights for justice.”

June 2 is actually “the most generous day of all time,” according to GoFundMe, as protests decrying police violence against Black people raged across the U.S. and the world.

“In response to the movement for racial justice and equality, more donations were made on this date than any other day in GoFundMe history,” GofundMe stated.

Canadians donated 30,000 times on June 2 alone.

The top Canadian fundraisers also reflect the holes in government support. Although Canadians enjoy free health care, those who are suffering from rare diseases or conditions still often have to pay huge sums of money to afford lifesaving medication, and don’t have many avenues outside of crowdfunding to afford those medications.

And although the top three fundraisers in Canada were concerned with one specific medical condition, a fundraiser for Regis Korchinski Paquet, a Black Indigenous woman who fell to her death while in the presence of police officers, also made the top five list.

Rounding out the top five Canadian campaigns was a fundraiser looking to raise money for the Ciasullo family after Karolina Ciasullo and her three young daughters were killed in a tragic collision.