Life with Parahemophilia
Every week, 12-year-old Karina arrives at McMaster Children’s Hospital for her treatment. She rolls up her sleeve, chooses which arm to use and which band aid she’ll want, and confidently engages with her care team. She’s been doing this for nearly her entire life.
Karina was just days old when her parents learned she had Parahemophilia, also known as a factor V deficiency, a rare and severe bleeding disorder. After a routine heel prick wouldn’t stop bleeding, her local hospital in Niagara quickly referred her to McMaster Children’s Hospital, where specialized testing confirmed the diagnosis.
A Second Home at McMaster Children’s Hospital
McMaster Children’s Hospital became a second home to Karina and her family. It offered expert care and a place where they could learn and feel supported. “It’s a safe place,” says Karina. “It’s like they’re part of my family.”
McMaster Children’s Hospital is a regional hub for complex pediatric care, meaning families like Karina’s can access the expertise they need all in one place. For children with rare conditions, that proximity can be life-changing.
Parahemophilia affects the blood’s ability to clot, which means that even minor injuries can cause prolonged or spontaneous internal bleeding. Because of her condition, even minor bumps or falls can lead to serious internal bleeds, especially in her joints.
Karina’s treatment includes weekly plasma infusions to replace what her body cannot produce on its own. These hospital visits are essential: there is no take-home version of her medicine.
The hospital’s team of hematologists, nurses, and physiotherapists worked closely with the family, ensuring they never had to navigate it all alone. Her mom, Loretta, learned how to monitor for dangerous bleeds, measure swelling, and stay calm in emergency situations. As Karina matured, they helped her understand her own medical needs in ways she could grasp, empowering her to become her own advocate.
“She’s a tough cookie for all the things that she has to go through,” says Loretta. “She does it with lots of resilience and strength, so I’m very proud of how strong she is and how far she’s come.”
Growing Up with Confidence and Support
Now in Grade seven, Karina educates classmates about her condition and confidently explains her treatments to new friends. She’s even brought them along to the hospital to show them what a day in her life looks like.
For Loretta, the difference McMaster Children’s Hospital has made in their lives is clear. She knows that without the generosity of donors, the expert care her daughter relies on might not be so close to home.
“Donations are the reason why kids like Karina can get the support that they need. We have the care closer to home because of those donations. We don’t have to go all the way to Toronto,” says Loretta. “The more money you have to give the hospital, the more they can give back to their patients.”