Benjamin and Nathan have hemophilia.
When Darryl Gray and his wife, Victoria Kinniburgh, had their first-born — a son they named Benjamin — little did they know the journey they would be taking as parents. They suspected something was amiss when as a toddler, he began to exhibit “weird bruises.” When the diagnosis came that he had hemophilia, “we were in shock. There was no history of bleeding disorders in our family that we knew of.”
Given that females are carriers and this rare condition typically affects males, Victoria went through genetic testing. When the test came back positive, her mother was also tested — ditto again. Not surprisingly, odds were that their second son Nathan, born a couple of years later, would also have hemophilia.
Parenting two children who have a condition that could kill them is “life-changing in the way you parent,” says Darryl. “You live in fear of the phone call.” Going to the dentist is not a walk in the park; contact sports like hockey and football are out of the question; and helmets are pretty much de rigueur for most other activities. For Darryl and his wife, the big challenge is letting their kids grow up to be relatively normal — “where risk is part of that.”
Because the blood of someone with hemophilia does not clot normally, it is necessary to replace the clotting factor that is either missing or low. This factor is dripped or injected into a main vein through a line that goes from a port that has been inserted under the skin in the chest. “We infuse them every second day — a process that takes almost an hour.”
When they were both fitted with the ports surgically in the hospital, it was scary for both the kids and the parents. “We didn’t know what was going on. All of us suffered a lot through that process.”
But thanks to the support of the Canadian Hemophilia Society — one of 16 national health charities working under the HealthPartners umbrella to transform the health of Canadians — Darryl and Victoria have learned how to manage their sons’ condition, as well as how to deal with teachers, camp counsellors, and so on. As a family, they take part in Society functions like special events, picnics and day camps, where they get the information they need and are able to network with other families, and where their sons see that there are other kids like them.
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