Boy behind record-breaking bone marrow drive to get transplant

He doesn’t have a perfect match yet, but an eight-year-old Regina boy who inspired a record-breaking bone marrow drive will be getting a transplant.

Two years ago, Vonn Chorneyko was diagnosed with a rare genetic disease called Fanconi anemia which causes bone marrow failure and heightens the risk of developing cancer.

His mom, Ashley Chorneyko, said they had to make the tough call with doctors to go ahead with a bone marrow transplant this summer in Toronto while he is still relatively healthy instead of waiting until he is in urgent medical need.

“In this case we’ve been slowly watching his blood counts decline and a progression with his disease since we’ve known he has it for two years,” Chorneyko said.

While she said it was tough as parents to decide to go ahead with a risky procedure, in the end they are happy they made the decision. She said waiting longer posed the risk of needing blood transfusions which could complicate the transplant procedure due to different antibodies in the blood.

“We opted to not have any blood transfusions done on Vonn and to go to transplant and get his bone marrow transplant done before he is so depleted that he needs to rely on blood transfusions to stay alive,” Chorneyko said.

Last month the family held a One Match bone marrow drive in Regina which drew more than 3,000 prospective donors between the ages of 17 and 35 to take swab tests to find a match.

Those swabs are still being processed to be added to the world registry of donors. According to what Chorneyko has been told by Canadian Blood Services, only one per cent of people will ever be contacted as a perfect bone-marrow match because they are looking for a genetic twin rather than a match for blood types or even organ donations.

If an exact match isn’t found on the bone-marrow registry before this summer, the transplant team at Sick Kids hospital in Toronto will investigate other donor options.

Although the prospective donors on the bone marrow registry are kept confidential, Chorneyko said if the family does get a call in the next few weeks in their hearts they will believe the match was from the world record-breaking bone marrow drive in Regina.

Even if her son doesn’t find a perfect bone-marrow match from weekly checks of the registry, Chorneyko is grateful for the public awareness about the One Match registry raised by the Regina drive.

“That’s wonderful, it’s all for the greater good, the people behind us have been extraordinary, always checking in ‘How’s Vonn doing’ and ‘Have you guys found a match’ and people kind of sitting at the edge of their seats hoping and praying for our family and hoping that we find a match it feels – it’s extraordinary,” she said.

She said it will also be exciting if the local Regina drive turns up a bone marrow match to save any life.