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7-year-old Tecumseh, Ont. girl needs stem cell donor as she fights rare, incurable disorder

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At just seven-years-old, Zoe Dudzianiec has undergone more than 200 blood transfusions.

The little girl is battling Diamond-Blackfan anemia, a rare and incurable disorder that affects bone marrow’s ability to produce red blood cells.

It was detected in Zoe just 24 hours after she was born.

“It was heartbreaking,” her mother Heidi said. “We ended up in the NICU [neonatal intensive care unit] and nobody could figure out what was wrong with her.”

That same day Zoe’s intensive treatment regime began.

Now, the little girl has to undergo chronic blood transfusions every 10 days – for which she has to travel to Toronto’s SickKids Hospital as the blood she needs isn’t available in Windsor, Ont.

She also undergoes 10 hours of chelation therapy every night at home, which involves IV treatments to balance the rate of iron accumulation following her frequent transfusions.

Her mom said it’s hard on her daughter, and seeing her go through it is hard on the family.

“I don’t think any mother wants to see their kids sick, even normally, and this is just constant worry 24/7,” she said.

There is no cure for Diamond-Blackfan anemia, but if Zoe were to get a stem cell transplant from someone who is a match, her mom said she wouldn’t have to undergo the blood transfusions anymore.

“This is the only thing that we have left right now,” Heidi said.

When he was born a little over a year ago, it looked like Zoe’s baby brother Milan might be the perfect match she needed. However it’s since been determined he may be a dormant carrier for Diamond-Blackfan anemia, so a transplant from him would actually kill her.

Zoe is one over 900 people in Canada alone hoping to find a stem cell match – with a shortage of donors.

Finding a so-called “10-out-of-10” match for her is made even more difficult by the fact that she is mixed-race.

The Dudzianiec family is being helped along by the Katelyn Bedard Bone Marrow Association (KBBMA), a Windsor-based charity that aims to help those left in limbo as they hope for a stem cell donor.

The KBBMA was born from Bryan and Joanne Bedard’s loss of their daughter Katelyn, who died of leukemia when she was three when she was not able to find a donor.

“Her situation is very similar to Katie’s,” said Joanne Bedard, who now serves as secretary for the KBBMA. “In the sense that her best option, or her best chance at surviva, is a stem cell transplant.”

Bedard said a lot of people are afraid to become donors because of a perception over how painful or invasive the process might be, but these days it mostly equates to taking a medication for a few days before giving blood.

She’s encouraging people to register to become a stem cell donor to help people like Zoe.

“It’s very easy to get on the registry. It really is,” she said.

To register, you need to be between the ages of 17 and 35 and in good health. Other than that, you mostly just need to swab your cheek.

Anyone interested can start the process through the Canadian Blood Services website and they will send out a swabbing kit.

In registering, you will not have the option to say you only want to help Zoe, but you could help others in the area or even across the globe.

For Zoe, it could mean the difference between life and death.

She said she’s not sure what she wants to be when she grows up yet , but her mom said she’s considered becoming a veterinarian.

Zoe likes painting and colouring, and she’s taught herself to play “Baby Shark” on the piano. 

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