Six-year-old Regina boy has rare blood disease

Vonn Chorneyko of Regina doesn't even know he's sick, but eventually the six-year-old boy will need a bone marrow transplant to save his life.

Vonn has a rare blood disease. Fanconi Anemia, or FA, is so rare only about 30 people in Canada have it.

• Six-year-old Regina boy in need of bone marrow transplant

FA is the result of a genetic defect in proteins responsible forDNA repair.As a result, the majority of FA patients develop cancer.

Ashley Chorneyko came to learn about the condition after her son came down with a lymph node infection in 2015.

Blood work revealed Vonn's numbers were off and more tests were done.

"I spent a lot of nights reading about it [FA]," Ashley said, recalling the research she did when she was told of the possible diagnosis. She also remembers hoping the test results would lead to anything other than FA.

"When we were presented with the information that he was confirmed with Fanconi Anemia, it was just total shock."

Ashley has helped form a group called FAv, which stands for Fanconi Anemia Vonn.

First annual FAv Gala held in Regina

She saidFanconi Anemia is so rare there's not a lot of funding from government, so families do fundraisers.

Everyone wanted to help.- Ashley Chorneyko

The first annual FAv Gala was held Friday night at the Conexus Arts Centre. When news of the dinner and silent auction for Vonn Chorneyko was made public, all 500 tickets quickly sold.

"Being in Regina, being part of a small community, you hear about a child who has something rare [and] everyone wanted to help. Everyone wanted to come," Ashley said, adding she hopes the event will also raise awareness of the importance of the bone marrow registry.

Ashley says right nowVonn feels great. They hope to keep him as healthy as they can for as long as they can.

"Right now he's stable," she said. "We take it day by day. When his numbers get more depleted and he gets sicker we will have to decide when is the right time for the transplant. Obviously it's very risky."