City boy needs bone marrow donor

Vonn Chorneyko just needs one match.

The eight-year-old boy is currently the only person in Saskatchewan known to have Fanconi anemia, a rare genetic disease.

As a result of the condition, Vonn is experiencing bone marrow failure, which causes a deficiency in all three blood cell types.

He’ll need to receive a bone-marrow transplant within the next six months.

The family recently learned that Vonn currently has no perfect donor match in the bone marrow world registry.

Vonn will still get a transplant even if it isn’t a perfect match.

But doing so will increase the risk of his body rejecting the transplant.

In a final push to help him find a donor, and raise funds for research into Fanconi anemia, Vonn’s family is holding a bone marrow donor drive on Saturday and a charity gala in April.

The Chorneykos are hoping to get 2,000 new potential donors signed up with the Canadian Blood Services’ stem cell registry, known as OneMatch.

Even if Vonn doesn’t find a match, a donor could help one of the other 20 to 30 people in Canada who also have Fanconi anemia.

“I tell people it’s just something to consider. It’s something you could do to save someone’s life,” said Vonn’s mother, Ashley.

You would never guess that Vonn Chorneyko has a rare genetic disease. The eight-year-old boy loves skiing and skateboarding.

Ashley is in awe of her son’s strength, both physically and mentally. His health may be in gradual decline, but Vonn’s lifestyle hasn’t slowed down.

“If we had the blood counts that he had, we would just lay in bed all day,” said Ashley.

Vonn may appear healthy on the outside, but he is still seriously ill. Because of his low blood cell count, Vonn can easily run out of breath, and has to be careful of getting an infection because of his compromised immune system. He also has a higher risk of developing cancers.

The bone marrow donor sign-up is Saturday, 10 a.m. to 10 p.m. in “Sillinger’s Corner,” on the second floor of the Co- Operators Centre. Potential donors must be between the ages of 17 and 35 and must provide a cheek swab. If people can’t attend the drive, they can sign up online at onematch.ca.

The charity event, called FAv Gala, will be held at the Conexus Arts Centre on April 20. Information on tickets for the gala can be found at favfoundation.ca

TROY FLEECE Vonn Chorneyko does some colouring under the watchful eye of his mother, Ashley. Her son is the only known case in Saskatchewan of a rare genetic disease called fanconi anemia. Vonn needs a bone-marrow transplant and currently does not have a match.