Regina boy in need of bone marrow transplant encourages donors to sign up — for everyone's sake

Eight-year-old Vonn Chorneyko is in the midst of bone marrow failure. His life depends on finding just one person in the world who’s a match to donate.

8-year-old Vonn Chorneyko has rare blood disease

Vonn Chorneyko reads a book with his mother, Ashley, in the eight-year-old's bedroom in Regina. Both Vonn and his mother are hoping he can stay healthy and do the things he loves. (CBC News)

Ashley Chorneyko is hoping to save her eight-year-old son's life this Saturday. 

"He's just a typical eight-year-old boy,. He lives every day and he just loves every day and is happy," she said of Vonn, who counts building snow forts with his dad and biking with his friends as some of his favourite activities.

"He's just wonderful."

But Vonn is unlike his friends in one respect. He has a rare blood disease that's causing bone marrow failure.

His life depends on finding just one person in the world who's a match to donate.

Even still, that's not why people should come to a donor drive that the family is putting on this Saturday in Regina, according to the Grade 3 student.

"You could save someone else's life, not mine," he said.

Vonn suffers from Fanconi anemia

Vonn was diagnosed with the rare blood disease Fanconi anemia two years ago. He's the only person in Saskatchewan with the disease that leads to bone marrow failure. The disease also heightens the risk of getting cancer.

The OneMatch stem cell and marrow network looked at donors worldwide to find an ideal match, a donor that would yield the most successful transplant possibility for Vonn.

"We just got the devastating news a couple of weeks ago, that it came back that Vonn does not have a match," Chorneyko told CBC Radio's Morning Edition host Zarqa Nawaz.

Vonn Chorneyko was diagnosed with Fanconi anemia, a rare blood disease, a couple of years ago, with the disease leading to bone marrow failure. His family is working hard to find a bone marrow donor to help save his life. (Submitted by Ashley Chorneyko)

While her son still seems healthy and remains energetic, his transplant team wants to find him a match before he becomes sicker, she said.

"The next few months is the time."

500 Canadians die due to lack of match

Potential donors have to fill out a form and undergo a cheek swab that takes five to 10 minutes to complete. People who do the swab could potentially be paired as a donor for someone else in the world, explains Robyn Henwood, OneMatch territory manager.

"At any given time in Canada alone, we have about 1,000 Canadians looking for a match," she said, noting half of those people will not find a compatible match. "What that ultimately means: 500 Canadians die because we've been unable to find them a donor."

People may not realize how simple the process is, both to test for a match and to donate, she said.

"The reality is 95 per cent of the time, it's like a long blood donation," she said of donating bone marrow.

The process of collecting stem cells peripherally, through a needle in the arm, takes four to six hours, depending on the size of the patient.

Finding out if you're a match to donate bone marrow involves a few steps, including first taking a cheek swab, followed by blood work to verify a match. Bone marrow can be collected through a slightly more invasive method: a day surgery that takes the bone marrow out of the hip, or through a less invasive method that involves a needle in the arm, which is similar to the process of donating blood. (CBC file photo)

The second method involves day surgery, in which a donor is put under for 45 minutes, while stem cells are taken from the back of the hipbone. This may leave them with a feeling as if they fell on ice and are a bit bruised or worked out too hard, but most people are back to work the next day, said Henwood.

People can choose whether or not they want to donate, and in most cases, how they want to donate. 

You have a better chance of winning the lottery than us calling you.- Robyn Henwood, territory manager with OneMatch

In Vonn's case, he requires stem cells taken from the hipbone to ensure his immune system can handle the transplant, said Henwood.

If a body rejects stem cells, it can be extremely painful, causing swelling throughout the body, welts on the skin, and possibly attacking internal organs.

"That's why we're always going to make sure we're picking the best donor, the best method for our patients," she said.

There's only a one per cent chance of making a match, said Henwood.

"You have a better chance of winning the lottery than us calling you. Not everybody who signs up is going to get called — almost nobody will be."

Target of 2,000 swabs

To get more people on the registry and have more chances of saving someone's life, Vonn's target is to collect 2,000 swabs on Saturday.

Donors must be between the ages of 17 to 35 and in good health to donate. They can sign up by going to a Canadian Blood Services clinic, visiting, or coming down to the weekend drive for Vonn. That drive takes place this Saturday between 10 a.m. and 10 p.m. CST at Sillinger's Corner on the second floor of the Co-operators Centre.

Somewhere in that 12 hours, Vonn's mother is hoping to find the one person who can give her son — or someone else who desperately needs it — a better future.  

"You never know — one day you could be that perfect match for someone to save their life."

With files from CBC Radio's Morning Edition