With the permission of Vonn’s parents – Colin and Ashley Chorneyko … we’d like to share with you – “The Story of Vonn”.
Vonn Chorneyko was born on September 14, 2009. A bouncing baby boy with normal development and considered healthy by all accounts. In January of 2015, Vonn developed an infected lymph node that required a short hospital stay and a minor surgical procedure. It was during this hospital stay that Vonn had his blood work checked for the first time. It showed “slightly irregular” and required follow up. Doctors felt certain that the blood work irregularity was likely due to the infection and all would return to normal. In March of 2015 follow up blood work was done and again his blood levels were still “off” – but not alarming. At this point Vonn was referred to a Pediatrician for ongoing care. Follow up was done again in June; Vonn’s blood still showed irregularities and doctors were becoming concerned in regards to his low red blood cells, white blood cells and platelets counts.
Vonn was then referred to a Hematologist who began a series of blood tests every 2 weeks in an effort to create a blood history and determine what was wrong with this small child. As the weeks dragged on Colin and Ashley fought to see a Pediatric Hematologist in Saskatoon and to have a bone marrow biopsy done on their son. They were getting desperate for answers and on August 5 a biopsy was done. The results of the bone marrow biopsy were not conclusive. With frustration they fought for the next step – the family believed that doctors were suspecting a bone marrow failure disorder of some kind but never could have imagined that their son had Fanconi Anemia. The next test, called a Chromosome Breakage Test was sent off to Calgary and unfortunately tested positive for Fanconi Anemia.
On October 1, 2015 Colin and Ashley were delivered the life changing news that young Vonn had been diagnosed with Fanconi Anemia. Further genetic testing would later confirm Vonn’s diagnoses. Vonn was born with Fanconi Anemia; however it did not become evident until he began to suffer from bone marrow failure. Currently Vonn is the only person in Saskatchewan with Fanconi Anemia (FA). Looking back Ashley (Vonn’s mom) says there have never really been any signs or symptoms of FA or any other health issues with Vonn. She says that he has always been on the small side and otherwise is a completely perfect and healthy child. Colin and Ashley consider Vonn extremely fortunate; he has no birth defects or physical anomalies.
The Chorneyko’s have received an overwhelming amount of bad news in the last few months, however they remain hopeful and optimist for Vonn’s future. They are thankful for many things; thankful genetics was able to find his mutation, FANCA, thankful that they have time to find him the best bone marrow match possible, thankful that Vonn’s lymph node infection led to his early diagnosis, thankful for all of the advances in FA treatment, and lastly extremely thankful that Vonn has spent 5 ½ years being raised as a “healthy child” and living a normal life. With this genetic information and with early detection Vonn will be properly monitored and screened for Leukemia and other forms of cancer throughout his life.
What is Vonn’s prognosis – well nobody really knows… but FA doctors are hopeful that Vonn can hold on for a year or two before needing to undergo a bone marrow transplant. Currently Vonn is monitored monthly with CBC blood work exams and is currently stable and doing quite well. Being the only FA patient in Saskatchewan and with no Children’s Hospital at this time – Ashley and Colin are investigating options for a transplant centre, which will require a 4-5 month family relocation for Vonn’s treatment when a bone marrow transplant becomes necessary – Toronto Sick Kids Hospital, Calgary and Minneapolis are all being considered.
The Chorneyko’s are making the most of their current family situation, living day by day. Vonn continues to be living a “normal” life and spends his time playing, going to school and enjoying his latest passion – Skiing!! Vonn’s little sister Bay (who has been checked and does NOT have FA) was also tested to determine if she may be a bone marrow match/donor for Vonn, and unfortunately she is not a match. Vonn will need to rely on the selflessness of a stranger on a Bone Marrow Registry, since his donor will be a unrelated donor. Colin and Ashley continue to advocate for all healthy Canadians between the ages of 17-35 to consider registering themselves with One Match – which is the Stem Cell Registry with Canadian Blood Services. www.blood.ca/en/stem-cells
Additionally, Ashley has formed a working committee of Regina women who are assisting her in raising funds for Fanconi Canada and Fanconi Anemia Research Foundation. This year’s FAv Gala (Fanconi Anemia Vonn) will be held on Friday, May 10th, 2019. Plans are well underway for this event and we look forward to sharing all of the details with our FB community over the coming weeks. Stay tuned for further updates on Vonn, information on FA as well as details on our upcoming FAv Gala!!