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

Six-year-old Vonn Chorneyko of Regina was feeling a little under the weather early last year. His parents took him to the hospital where he was diagnosed with an infected lymph node. The doctors drained the node and he was given a clean bill of health.

But when Vonn's blood tests came back, there was something irregular about his red and white blood cell count. More tests were done.

Eventually he will keep deteriorating and will need a bone marrow transplant. So our main goal is to find a match for him.- Ashley Chorneyko, speaking about her son

From January until June in 2015, Vonncontinued to struggle with his health. His bone marrow had started to fail.

His parents knew something had to be causing their normally healthy son to become sick. Last October, they were given an answer.

Vonn was diagnosed with a rare inherited genetic disorder called Fanconi anemia.

"We knew it was going to be something kind of bad, but we never guessed that it would be such a horrible diagnosis and something so rare," said Vonn's mother, Ashley Chorneyko.

What is Fanconi anemia

Fanconi anemia is an inherited anemia that leads to bone marrow failure. FA patients are also atgreater risk of developing cancers at a much earlier age. The current average life span for someone with Fanconi anemia is 33 years.

A bone marrow transplant can greatly increase that number, which is why the Chorneykos hope to see plenty of people this afternoon at Mosaic Stadium in Regina.

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

They partnered with Canadian Blood Services' OneMatch Stem Cell and Marrow Network and the Regina Thunder football team for a bone marrow donor drive.

The event, which took place Saturday afternoon, attracted 170 people who provided a simple cheek swab.

Supporters noted the effort set a record for the most donors ever in one drive for the region (which includes Alberta, Saskatchewan and the Northwest Territories).

Seeking donor

Ashley is hopeful a compatible donor can be found for her son.

"Vonn's stem cells don't mature and grow into red and white blood cells and platelets. Eventually he will keep deteriorating and will need a bone marrow transplant. So our maingoal is to find a match for him."

The emotionalstruggle

Fanconi anemia can be draining mentally on a family. Ashley said Vonnis feeling pretty good right now, but admitted thather family knows what lies ahead.

"Mentally, it's just a really emotional disease because you're almost always waiting. You know he's going to get sick and just waiting and dreading the future if he even gets a cold."

Ashley explainedher family, which includes a 3 year-old daughter who does not have FA, has really learned to embrace living one day at a timeand enjoyingmoments as ways to deal with Vonn's condition.

Saturday's drive was intended, in part, to be one of those moments.

"It's a distraction but it's such a positive distraction and it keeps us going. Even though we don't have control over this disease, we feel like we do because we can do something about it," she said.