Toronto toddler searching for one-in-40-million donor to save her life

TORONTO -

The family of three-year-old Leia Fallico is on the search of a lifetime — they're looking for a donor to provide Leia with a life-saving stem cell transplant.

In February, Leia was diagnosed with Dyskeratosis congenita, a rare genetic form of bone marrow failure.

“We were so shocked and it was so hard to believe because we saw a child who didn't present the symptoms but the thing about this genetic illness is that it can present at any time,” Leia’s mother, Shonna Follico, told CTV News.

In late May, Shonna and Marco Fallico were told by The Hospital for Sick Children in Toronto that Leia would need a stem cell treatment.

However, Leia’s mixed ethnicity — she is both Persian and European — has made finding her a donor challenging. She will likely need a donor of a similar background, the family said.

Canadian Blood Services, who facilitates stem cell donations in Canada, said that “while not always the case, patients are more likely to find a matching donor among those who share their ethnic ancestry which makes an ethnically diverse donor base extremely important.”

“Only 3.5 per cent of the Canadian Blood Services’ stemcell registry is made up of people of mixed ethnicity making it hard for patients like Leia to find a match,” Fallico said.

“That is a scary percentage, especially when we are going through this with our daughter and for anyone else out there who is of mixed race looking for a bone marrow transplant,” she said.

As of right now, out of 40 million donors currently registered worldwide, none are a match for Leia.

The Fallico family has launched a campaign in the hopes of finding a donor for Leia.

The campaign has caught the attention of many prominent voices across the province.

Ontario’s Minister of Education Stephen Lecce has raised concerns about the issue, meeting with the Fallico family and urging Ontarians to check if they could be an eligible donor.

“I want you to join me today in taking a swab to help save [Leia’s] life … It literally takes thirty seconds … It doesn’t hurt,” Lecce said in a video of the meeting.

The City of Vaughan has also released a statement on Leia’s journey.

"To Marco, Shonna and the Fallico family, I want you to know that you are not alone,” wrote Vaughan mayor Maurizio Bevilacqua.

“The entire Vaughan community is with you every step of this journey to find a donor match for Leia,” he said.

A GoFundMe set up for the Fallico family has raised over $150,000 so far. The family says that funds will go towards “costs associated with Leia’s transplant surgery, therapy sessions, the cost to purchase swab kits from a private lab in the US and additional costs for testing when a donor is matched.”

Right now, the Fallico family’s primary goal is to urge others to check their donor eligibility.

“Our main focus is to plead with everyone that is able in Canada — if you're between 17 and 35 — please register with blood.ca … They will ship you a free swap. It’s easy,” Marco Fallico said.

Eligible donors can register through Canadian Blood Services or Swab the World.