LAC LA BICHE - Ezra Marfo’s long journey after being diagnosed with Acute Myelogenous Leukemia (AML) in May of 2021 ended with the toddler’s death in September — but his legacy will continue through a new foundation to raise funds and awareness for stem cell donations.
Throughout his medical treatments, Ezra’s family searched to find a stem cell match. Several events were held, inviting potential donors from near and far, said Jacob Marfo, Ezra's father who spent every moment beside his son.
“With the exception of the days that I was going out to do stem cell events, I was with him every day of his life from the time he was born; until the time he went to be with his maker,” Jacob told Lakeland Today, just weeks after his son’s passing.
Speaking on behalf of his family, Jacob said Ezra was a bright light.
“He loved the little things. And when we would pray, you think he's not listening, but as soon as you finish, he would just shout ‘Amen’…he is very special.”
Although the rare disease kept Ezra in and out of treatments and confined to hospital beds, when he had the energy during his good days, Jacob remembers his son’s strength and adventure.
“He would be laughing and laughing and he just waits as soon as you open the door. He just tried to sneak out and go…he really enjoyed the simple things.”
Building the stem cell registry
With their love and memories still fresh, the Marfo family is raising awareness to remember Ezra and help other children and people going through a similar experience.
The young African family’s search for a donor match is creating awareness for the lack of stem cell donors from visible minorities available in the Canadian Blood Services registry, said Jacob.
“Ezra needed a stem cell transplant earlier on, and we thought it is something which is readily available, just like blood at the blood bank.” But it wasn’t.
“Very few people of African origin, or bi-racial people are on that database, and so we did not find a match for him,” Jacob said, explaining that even immediate family, including his own stem cells weren’t a perfect match. Jacob was only a 70 per cent match for his son, and as Ezra’s diagnosis grew worse, the young father began what would grow to be the start of a legacy campaign in his son’s memory.
After making connections with the family’s church community, Canadians of African descent across the country began signing up to become donors which has led to nationwide stem cell drives, says Jacob.
“We were able to start a drive in Calgary, and then from Calgary…we did multiple events in the Greater Toronto Area like Mississauga, Brampton and North York and other places around it and Ottawa…and Winnipeg,” he said.
Finding a match
The events, which include individuals getting a cheek swab to identify potential matches, have seen an increase in the registry, said Chris vanDoorn, the Canadian Blood Services community development Manager for stem cells.
“We noticed a big increase in registrants from those communities…Those people who are registered now have a chance to save someone in that community, and when another patient comes up with that [ethnic] background.”
Finding individuals who share the same ethnicity is crucial in finding a match, vanDoorn explains.
“It goes by your DNA, the make-up of your parents and your ancestors…you’d need to find a match within the same ethnically diverse background,” he said.
Currently, the number in Caucasian communities on the stem cell registry is 66 per cent, with people of Asian descent making up roughly seven per cent of the registry, he said.
Supporting those in need
As Jacob, an employee of Lac La Biche County’s Environmental Services department, and his family work toward encouraging more minorities to sign up to donate, he is also finalizing the ground-work of the foundation on behalf of his son. The Ezra Marfo Cancer Foundation is aiming to raise awareness, support provincial cancer facilities, and assist families going through treatment, he said.
"At first the focus was to help Ezra, my boy ... but now, the best thing to do is so that another family or someone's grandma, boyfriend, husband, wife, sister or brother doesn't have to go through what we went through.”
Part of that journey included lengthy hospital stays where the Marfo family had to find accommodations in other cities. It was frightening, expensive and emotionally-draining, Jacob said. He hopes Ezra’s foundation can reduce those challenges for other families.
“The third goal is to support parents of families at the two Children's Hospital at the oncology unit specifically… looking at what we went through, we had to stay in the hospital for 475 days to be exact and most of it was in isolation. So, we don't want another person to go through that.”
Jacob hopes to have his son’s foundation up in running as soon as possible. The first dollars — and regular donations — will come from his own paycheque to help others.
“I've decided every month that five per cent of my pay, I'll put that into the foundation,” to give back to the community and pay it forward.
The awareness that has been raised already, financial assistance given to the family for Ezra’s treatments and the overall support from the community has pushed the Marfo family to go forward with the foundation.
As the foundation carries Ezra’s legacy, Jacob says it also carries the strength and support that his own family has relied on during their unimaginable struggles.
Jacob said the community, his co-workers and local connections have felt his family feel supported.
“Thank you to the Environmental Services Department, especially Molly Fyten, Lac La Biche County and the employees, they've been very supportive of me,” he said, also highlighting the support from local levels of government, including Fort McMurray-Cold Lake MP.
“Laila Goodridge has been there for us…she’s been very, very supportive. A lot of individuals donated to support us, I don't know all the names, but I want to thank them all,” said Jacob.
Currently, the Foundation website is under construction says Marfo, but in the future www.swab4ezra.com will be fully operational he adds.