If you asked Jacob Marfo 10 years ago if he thought he would become an advocate for the Canadian Blood Services Stem Cells for Life, his answer would have been no.
The Edmonton man said before his son got sick at just nine months old, he was a blood and plasma donor, but didn’t know anything about stem cells.
“That’s the sad reality,” he said. “I also didn’t have any idea about the statistics at that time.”
People are more likely to find a stem cell match in donors of similar ancestry or ethnic background but less than two per cent of donors on the Canadian Blood Services Stem Cell Registry are Black.
Jacob’s son, Ezra, was diagnosed with leukemia at 11 months old.
Ezra spent 475 days in hospital between the Alberta Children’s Hospital in Calgary and the Stollery Children’s Hospital in Edmonton.
“Before that, he was this bubbly boy who would be playing every day,” he said. “Going around, like crawling to remove all my power cables and crawling under my desk when I’m working.”
Doctors said Ezra needed a stem cell match, so the family got to work advocating for people to be tested.
Jacob started the Swab 4 Ezra campaign, urging more people — especially Black Canadians— to register as stem cell donors, flying from coast to coast to make presentations, and speaking to media in hopes of raising awareness.
Unfortunately, their perfect little boy never found his perfect match.
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Ezra died in September 2022.
Edmonton filmmaker Sandro Silva had originally tried to see if he was at match for Ezra during the search for a donor. He said he didn’t qualify and soon received a letter from Jacob.
“They said he had passed away a couple of weeks ago,” Silva said.
“I was just in tears.”
So, he reached out to Jacob.
“I said ‘Look, I’m very sorry I couldn’t help. I tried. But I couldn’t,'” he said. “What I can do as a producer, as a filmmaker, is put the story out there.”
The pair worked together for more than two years filming, Ezra’s story and the search for a donor,.
Their film The Perfect Match, sheds light on critical shortcomings in Canada’s stem cell registry and underscoring the life-saving impact of increased donation in Black communities.
While Jacob (Founder of the Ezra Marfo Cancer Foundation), stars in the show, it also includes the stories of Ufuoma Muwhen (Founder and CEO of NotJustYou), and Revée Agyepong Brown (author of My Sickled Cells) who were saved by stem cell donors.
“It is important for us, because the mistrust of the Black population, or the minorities, rather, on these organizations that deal with things like health, regulation of blood, is something that hasn’t started yesterday, but we have to really tackle that in a way that builds the awareness,” Silva said.
“As a Black filmmaker this story is deeply personal,” he added. “Working on The Perfect Match helped me better understand how Black and other minority communities in Canada can work together with institutions, organizations, and social services providers to overcome mistrust of the medical system.”
The world premiere will be held at the NorthWest Film Fest on April 11 at 7 p.m. at Metro Cinema in Edmonton.
Canadian Blood Services will be on site following the screening, offering the audience the opportunity to join the national stem cell registry and improving the chances of finding a match for patients in need.
Jacob said he hasn’t been able to watch the film from start to finish yet, but will watch it with support around him at the premiere.
He knows it will be hard to see his son again, especially on the big screen, but adds it’s not about something bigger — helping others, just like his son would have wanted.
“The legacy I want to leave for Ezra is the stem cell registry — to become an advocate so that more and more people will be on the registry, irrespective of the colour of their skin,” he said.
“So that when someone within that population requires a match for any blood or other one will be available to save their lives.”
More information on the film can be found here.
My heartfelt sympathies to Jacob and the family. Losing a child to such an awful disease is beyond devastating.
As a leukemia survivor myself, 3.5 years in remission so still not out of the woods yet, I get this. I’m hopeful for not only myself but millions of people dealing with all kinds of cancer.
This article made me wanting more information, on all aspects of stem cell compatibility.
You made me cry. Such a sad story and yes, we as a country have a lot to learn yet especially when it comes to medicine and race health issues.