Swab drive in Montreal to help 15-month-old with rare disease in California

A Montreal-based organization, in collaboration with student organizations at two local universities, are working together to help a 15-month-old baby living with a rare disease in California.

Swab The World, along with Filipino student groups from Concordia and McGill universities, is holding a swab drive on Friday, aiming to find a life-saving match for Leo Kent.

“It’s very quite simple to save a life. Doesn’t mean you need to be a policeman, a fireman or a doctor, it could really be with a cheek swab,” said Mai Duong, co-founder of Swab The World, an organization that connects qualified donors to their country’s registry.

Leo was six months old when his parents found out that he had a rare primary immunodeficiency disease caused by a gene mutation called, X-linked hyper-IgM syndrome and with a survival rate of 20 per cent by the age of 25, Leo needs to find a stem cell transplant match in order to survive the disease.

“It’s been incredibly stressful. It’s honestly been the worst, was the worst few months of my life having my son in the hospital and the anxiety that goes along with that,” said Thomas Kent, Leo’s father.

Kent says that he and his family, including Leo’s three-year-old sister, are not full matches, which means survival rates would be lower if a transplant were to take place.

“We’re hoping that maybe within the FOCUS Concordia community or MUFASA McGill community, we can reach somebody that could potentially be a match for Leo,” said Angelo Reyes, co-president of the Filipino Organization of Concordia University Students.

Kent, who lives in California with his family, says finding a match is challenging because Leo is mixed race; his mother is Filipino and Kent has French, English and Jewish ancestry.

Duong, who had leukemia herself, says she understands what Leo’s family is going through.

“It was very difficult for me to find a donor because I’m Vietnamese,” said Duong.

“I was saved by a perfect stranger,” she added.

Duong says countries such as Vietnam or the Philippines don’t have stem cell registries.

“You have to rely on Canada, where we have more people, more diverse people, but not a lot of people know about stem cell donation,” Duong.

Kent says he’s hoping the swab drive in Montreal will help find a full match for his son.

“You could save somebody’s life and I can tell you it would just be such a relief for us and I’m sure every family in the same situation with various conditions to know that you have a fully matched donor going into transplant.”