3-year-old Ontario girl in urgent need of rare mixed-ethnicity stem-cell donor

Three-year-old Leia Fallico's life depends on a stem-cell donation the only cure for a rare genetic disorder that's causing her bone marrow to fail.

But of the 40 million registereddonors worldwide, not a single one wasa perfect match for Leia this spring.

"Not even one," said Leia's mother Shonna Fallico.

Leia suffers from dyskeratosiscongenita, whichimpairs the bone marrow's ability to create bloodcells. A severe case can lead to leukemia and other serious illnesses later in life.

The challenge isthat sheisof mixed ethnicity, Persian and European, which means she likely needs a donor with a similar background, who has a better chance of carrying the same DNA markers to make the transplant successful.

But in Canada, for example, only 3.5 per cent of registered donors are of mixed ethnicity and the vast majority of donors, about two thirds, are Caucasian, according toCanadian Blood Services.

It'sa devastating blow to Shonna andMarco Fallico, Leia's father. Thefamily from Vaughan, Ont. just north of Torontoisnow imploring people around the world to become donors. They'rehoping for a match that may save their little girl's life and other kids like her.

"Despite all the things she has to go through, she's still smiling," ShonnaFallico said. "She laughs all the time. She dances all the time. She's like a bright star.

"The outcome has to be good. There is no other possibility."

Leia urgently needs a donor

Last month, Leia underwent a blood transfusionto help maintain her red and white blood cell and platelet levels, a stop- gap measure that will happenmore and more frequentlyuntil she gets a transplant, Marco Fallico says.Leading up to the transfusion, when her blood count levels are low, she feels fatigued and bruises very easily.

Leia's relatively stable condition could change at any time, her mother says.

"That's why there's this huge urgency for finding a match for a bone marrow transplant immediately," she said.

They've raised more than $150,000 through crowdfunding to help with costs associated with Leia'scare. Extra funds will be donated to two clinical trials at Toronto's Sick Kids Hospital aimed at treating and curing dyskeratosiscongenita.

Anyone who qualifies and wishes to register can do so throughCanadian Blood Services or Swab the World.

You're eligible to join the registryif you're between theages of 17 and 35 and in general good health, among other factors, according to the Canadian Blood Services. Blood donations are the most common way to donate stem cells.

ShonnaFallico sayswhile findingLeia a match is her first concern, her heart goes out to other kids ofmixed ethnicitieswho need a donor, too.

"They have such a low percentage of a chance to find a donor," she said. "So we're really hoping that everyone who can goes out and gets swabbed and stays on the registry. They could be a person that could save someone's life."

'Theirselfless act saved my life'

Close to 1,000 people in Canada are waiting to match with a stem cell donor, saysMoneet Mann, a stem-cell territory manager with Canadian Blood Services. She's part of the push to get more people registered.

"It should be such a broad registry that individuals shouldn't have to wait for a match," Mann said. "There should already be a potential match waiting for them."

Patients sometimes have to wait months or years for a donor, Mann says. She was one of them.

She was diagnosed with acute myeloid leukemiain 2013 at the age of 24,and the only cure was a stem-cell transplant. Initially, there was no match.

"It was terrifying," said Mann, who's South Asian."Your walls just come tumbling down."

Every week, she and her family heldevents to raise awareness aboutthe stem-cell registry, signing up 2,000 donors. Then, six months after her diagnosis, Manngot her miracle.

"There was somebody in this world that ended up matching and agreed to donate their stem cells for me," she said.

"And I'm basically here because of them. Their selfless act saved my life."