CALGARY ( 660 NEWS ) — Tonight, the Calgary Tower will glow red to mark World Hemophilia Day. A mother from Okotoks is pushing for a new treatment for people with the disorder in Canada.
Hemophilia is a rare blood disorder that occurs when blood is missing a specific protein which allows it to clot.
Andrea Radke’s nine-year-old son Nicklas lives with Hemophilia-A, something his mother says he was diagnosed with at age six.
“He had a few situations where he had bleeding that just didn’t feel right,” his mother told 660 News, adding, “the straw that broke the camel’s back was when he lost one of his incisors, and the wound in his gum was bleeding for three days. That was the last straw.”
Radke says they then were referred for blood work, where Nicklas was diagnosed with Hemophilia-A.
She says that the disease affects everything from the after-school activities her son can participate in, to having special plans in place to keep her son safe.
“Every day we have to think about what effects any activity would have on him,” Radke says, adding that they had to pull their son out of hockey for fear of his safety.
“I had to make a lot of arrangements. I had to get an emergency plan at school in place. I had to get an emergency plan with Alberta Health in place … in case an ambulance was ever called for him there is a plan in place,” she explains.
He currently receives infusions of the protein his blood is missing, factor eight, every three days. Radke says this has been a difficult journey for Nicklas, who was afraid of needles and had to access services from a local children’s hospital to overcome his fear.
Radke says that Hemophilia Day is important for raising awareness for the condition, which affects approximately 3,000 Canadians.
She is advocating for the government approval of Hemlibra, a drug she says has had great results for people with Hemophilia.
“If people would be willing to help us by signing a letter campaign from the Canadian Hemophilia Society, in order to make the government aware that we need this treatment,” Radke says, adding, “We’re a small community, so we need every support we can get.”
A prewritten letter from the Canadian Hemophilia Society can be found here.