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Community rallies in support of Regina boy with rare disease in bone marrow drive

6-year old Vonn Chorneyko is all smiles as 170 people got swabbed for a possible bone marrow match – Apr 16, 2016

REGINA – Vonn Chorneyko is your average 6-year old boy who loves playing football.

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What isn’t so average, however, is his rare blood disorder.

“Fanconi Anemia is a rare disease, it’s inherited”

In fact, Vonn is the only person in Saskatchewan with the disease. The rare disease is inherited, and only affects a small number of the Canadian population.

“We’re trying to teach him. We call it sick blood”.

“You know something bad is going to happen to your child, so you’re just kind of waiting for that to happen”, Ashley emotionally explained.

Vonn will need a bone marrow transplant to survive; his family was told he needs the procedure within 1-2 years. But sometimes finding a match can be difficult.

Fewer than 25% of patients who need stem cell transplants are able to find it within their family. That means about three quarters will need to rely on volunteer donors.

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According to One Match, the best candidates for a match are males between the ages of 17 and 36.

It’s why the Regina Thunder Football Club are all in position to sign up.

“It’s a little bit of pain [but] is nowhere near the issues that those kids are going through as of right now. So I’m sure our guys will step up and look forward to the challenge”, Regina Thunder head coach Scott MacAulay said.

“This really gives him a new hope on life, a new lease on life. So finding him a match is really important”, One Match Robyn Hanwood said.

Approximately 170 people had signed up during the bone marrow blood drive.

“The ultimate goal for my family is to make sure my son has the most successful transplant that he can have”, Ashley said.

The community will continue to rally to help in Vonn’s battle with a fundraising gala next month for Fanconi Anemia research.

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