Little boy in desperate need of stem cell donation hopes to find match in Montreal

Fifteen-month-old Leo Kent is your typical fun-loving toddler.

His favourite activities are watching Ms. Rachel and going to the playground, but he lives with a grave disease that marks every day of his young life.

"We're kind of scared. We don't really know what to do," his father, Thomas Kent, tells CTV News over Zoom from the family's home in San Francisco, U.S.

Leo was diagnosed at six months old with X-linked hyper-IgM syndrome, a rare primary immunodeficiency disease caused by a gene mutation.

It occurs almost exclusively in boys, affecting one in every million.

According to numerous medical research, "the overall prognosis is poor, with an average of 20 per cent survival by age 25."

As a result, Leo needs to find a stem cell transplant match in order to survive the disease.

Neither his father nor his mother, Roann Rabanillo, or his older sister, Vivian, are good enough matches.

Leo Kent desperately needs a stem cell transplant. (Kent family)

Things get even more complicated because Leo is half Filipino, as well as a quarter Jewish and French.

"It's good to have hope," said Kent. "I think it's extremely unlikely [we'll find a match], to be honest...Most of the people that I've reached out to have said... they've never been contacted, meaning that they have never been matched."

All the same, Kent says the doctors tell him they're confident that if they do manage to find a donor, they can give Leo a better quality of life -- but the procedure itself is dangerous.

"They suppress your immune system with chemotherapy to get the new graft in, the new bone marrow," he explains. "While you're in that state, you're really vulnerable. And these viruses that you can...carry...in your life, they kind of hide in your body and they can come back [and trigger a reaction.]"

Leo Kent desperately needs a stem cell transplant. (Kent family)

If Leo doesn't find a perfect match soon, doctors say they will try to use Kent as a haploidentical donor, also known as a half-match transplant.

"We have to follow what the doctors recommend because they will always know more than we do but going into a transplant with not an ideal match is very frightening," said Kent.

Swab drive in Montreal

Little Leo's plight caught the attention of Montreal-based organization Swab The World, co-founded by Mai Duong, a cancer survivor who knows all too well how difficult it can be to find a stem cell match.

"I couldn't find a compatible stem cell donor, because I'm from an ethnic background," she tells CTV News, adding a new mother eventually saved her life by donating her umbilical cord blood. "Our promise is to give a fair fight to all patients, and to find as many stem cell donors from different ethnic backgrounds."

Leo Kent desperately needs a stem cell transplant. (Kent family)

Duong, a mother of two, says Leo's case particularly resonated with her.

"It's just extremely, extremely sad because he's a baby," she said, noting her children are also biracial. "When they [his parents] found out that he has that terrible illness, they absolutely need to find a stem cell donor, and they know that it's going to be very challenging because of his biracial background."

Swab The World, in collaboration with the Filipino student organizations at Concordia and McGill universities, is organizing a swab drive on Friday in the hopes of finding Leo his life-saving match.

"It was important for us to help out because stem cell donation, it's really important that the donors really are connected through ethnicity," said Angelo Reyes, co-president of the Filipino Organization of Concordia University Students (FOCUS). "If we're able to give this opportunity for Leo to be able to find a donor and just live the most normal life possible, that's really what we want to do."

In Quebec, a person must be between the ages of 18 and 35 to register as a stem cell donor.

The Swab The World event is set for Friday, March 15, from 6 p.m. to 10 p.m. at Concordia's Loyola campus (7141 Sherbrooke St. O.)