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

12:21  22 june  2021
12:21  22 june  2021 Source:   cbc.ca

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The mother of a three - year - old girl who needs a stem cell donor is urging more Asian people to register as donors . Nimita Mistry, from Reading, said she has less than a year to find a suitable donor match for her daughter Layla. Of the 1.3 million registered donors at the end of 2016, fewer than 6% were of Asian ethnicity , according to blood cancer charity DKMS. If you are white Northern European your chances of finding a match are 69%, the charity states. This drops to 20% if you are from a BAME (Black, Asian and minority ethnic ) background, according to its data.

The mother of a three - year - old girl has issued an urgent appeal for people to tested for stem cell donation to see if they can save her daughter's life. Ava Stark, who has a rare blood disorder, was just 24 hours from going to hospital to prepare for a transplant when her family was told the donor had to pull It contains stem cells , which are the "building blocks" for other normal blood cells (like red cells, which carry oxygen, and white cells, which fight infection). Some diseases, such as leukaemia, prevent people's bone marrow from working properly. And for certain patients, the only cure is to have a stem

text, whiteboard: Three-year-old Leia Fallico has a rare genetic condition and requires a stem-cell transplant, but she's still waiting for a donor match. © Submitted Three-year-old Leia Fallico has a rare genetic condition and requires a stem-cell transplant, but she's still waiting for a donor match.

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 registered donors worldwide, not a single one was a perfect match for Leia this spring.

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

Leia suffers from dyskeratosis congenita, which impairs the bone marrow's ability to create blood cells. A severe case can lead to leukemia and other serious illnesses later in life.

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The search for a matching stem cell donor becomes exponentially more difficult if you are a member of an ethnic minority WATCH: Urgent need for more biracial stem cell donors . Chow is currently one of roughly 25 people of mixed ancestry looking for a stem cell match in A poster created by Jeremy and Evelyn Chow’s 10- year - old daughter to encourage diverse people to donate stem cells .

The family of a five- year - old girl in the Ottawa area with a rare blood disease has begun a social media campaign in hopes of quickly finding a stem cell match. Hillary is in urgent need of a stem cell transplant, but none of her family members are a perfect match, meaning the family has been forced to search for outside help. They are encouraging anyone interested in joining the stem cell registry to sign up at the Canadian Blood Services website, where a swabbing kit can be sent free of charge.

The challenge is that she is of 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 to Canadian Blood Services.

It's a devastating blow to Shonna and Leia's father Marco Fallico. The family from Vaughan, Ont. —  just north of Toronto — is now imploring people around the world to become donors. They're hoping 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," Shonna Fallico said. "She laughs all the time. She dances all the time. She's like a bright star.

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A 12- year - old girl in need of a lifesaving stem cell transplant is calling for more people to become bone marrow donors to save others like her. She said she believed the campaign was "not going to help me", but hoped to help others who need a transplant. Events are being held across Nottingham to sign up potential donors . Lilya, who is a pupil at Wollaton's Fernwood School, is undergoing chemotherapy and waiting for a bone marrow donation .

Seven year old Chloe from Sunderland was born with a rare blood disorder called Diamond Blackfan Anaemia. For many, the best chance of survival is finding a matching blood stem cell donor . There are about 2,000 people in the UK in need of a donor from an unrelated person – you could be that potential lifesaver? For more information on blood cancers and ways to support people like seven year old Chloe, visit DKMS.org.uk; a blood cancer charity working hard to register more potential lifesavers to give people like Chloe a second chance of life.

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

Leia urgently needs a donor

Last month, Leia underwent a blood transfusion to help maintain her red and white blood cell and platelet levels, a stop- gap measure that will happen more and more frequently until 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.

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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's care. Extra funds will be donated to two clinical trials at Toronto's Sick Kids Hospital aimed at treating and curing dyskeratosis congenita.

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It was an emotional moment on Tuesday for Debojyoti, a 26- year - old software professional from Bengaluru, when he met four- year - old Shia from Kolkata, recipient of his blood stem cells . As per protocols, the identity of the donor and recipient are kept anonymous for two years, and thereafter they can be introduced to each other. Latha Jagannathan, director of DKMS-BMST, said many patients suffering from blood cancer and other blood disorders need a blood stem cell transplant to survive.

image captionMason Arrowsmith needs a stem cell or bone marrow transplant but there is a backlog in the processing of possible donors . The family of a baby with blood cancer are raising funds to tackle a backlog in the processing of stem donors . Mason's mother Katie Jordan, from Stockton, said: "The hospital has been absolutely amazing, but unfortunately after searching worldwide there is no match for Mason due to his bone marrow being so rare . "We need to get him to transplant as soon as, the hospital is looking at the end of February, using me as his first donor in the hope that this will help

Anyone who wishes to register can do so through Canadian Blood Services or Swab the World.

Shonna Fallico says while finding Leia a match is her first concern, her heart goes out to other kids of mixed ethnicities who 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."

'Their selfless act saved my life'

Close to 1,000 people in Canada are waiting to match with a stem cell donor, says Moneet 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 leukemia in 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 held events to raise awareness about the stem-cell registry, signing up 2,000 donors. Then, six months after her diagnosis, Mann got 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."

Ontario reports 210 new COVID-19 cases, lowest count since mid-September .
Ontario administered 180,369 vaccines in the last day. There is 35.4 per cent of the adult population who are fully immunized. First dose adult coverage stands at 77.3 per cent. Meanwhile, 532,779 Ontario residents were reported to have recovered from COVID-19, which is about 98 per cent of known cases. Resolved cases increased by 326 from the previous day. There were more resolved cases than new cases on Monday.

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