Alex Pasichnyk is a 12-year-old girl from Canada, who enjoys playing piano and swimming. Last June, her life was suddenly interrupted by a rare disease. Alex has to leave her life in the sixth grade– she’s only been to school three times since everything changed.
Alex’s mother, Lisa Pasichnyk, is an emergency nurse at Stollery Children’s Hospital. When her daughter started showing mysterious bruising and fatigue, Lisa knew something was wrong. One day she say Alex, pale and struggling to breathe as she climbed the stairs, and something in her heart stopped. She took Alex to the emergency room for lab work, and heard back from the hospital that very evening. The answer was something she had never imagined as a possibility for Alex. Lisa tells CBC News that it was the worst phone call of her life.
Alex had aplastic anemia.
Sheldon Pasichnyk, Alex’s father was relieved– he had been expecting a leukemia diagnosis. Aplastic anemia sounded at least more treatable, he thought.
This is true, to an extent. Aplastic anemia can be treated– but Alex needs a bone marrow donor.
Aplastic anemia is a blood disorder. It’s rare, but its effects range from mild to life-threatening. Aplastic anemia occurs when the stem cells in the bone marrow responsible for producing blood are damaged in some way– this can happen for a variety of reasons, at any age. If the bone marrow isn’t able to produce enough blood to sustain a person, they will start exhibiting severe symptoms, such as excessive bleeding, difficulty breathing, and fatigue. To learn more about this rare disease, click here.
Alex receives blood transfusions at Stollery Children’s Hospital twice a week. She’s been doing this since her diagnosis, and it prevents her from being able to return to her old life. What Alex really needs is a bone marrow donor– if she received someone else’s stem cells, her body could start producing blood on its own again.
This is easier said than done. When you receive any type of organ or blood transplant, the donor and recipient need to share biological markers. However, bone marrow is even harder to match. The bone marrow produces white blood cells, which are responsible for the bodies immune system– essentially it differentiates the substances in your body that are “you” or “not you,” and protects you against foreign materials. This means, Alex needs to find a donor whose immune system matches hers almost exactly. Otherwise, her body will reject it.
It’s unlikely that someone who needs a bone marrow transplant will find a match in their family, and many people do not find a match at all. Most of the time, there is only one person in the entire bone marrow registry who can donate to a recipient. Alex is one of 800 people waiting for a bone marrow transplant in Canada, but she’s on a network that searches for donors in 17 countries. There’s a better chance that she will match with someone who, like her, has Polish or Ukrainian ancestry. Her donor will need to be between 17-35-years-old.
