Frédéric Parisien is not your ordinary teenager. The Grade 12 student at Vankleek Hill Collegiate Institute was born with hemophilia, a potentially life-threatening blood disease. Not only has he pursued a passion for sport despite this health challenge, but his compassion and his desire to help others reveal a maturity beyond his years.
Hemophilia is a rare genetic disorder in which blood doesn’t clot normally because it lacks sufficient blood-clotting proteins. Hemophiliacs bleed for a longer time after an injury than those without the disorder. Small cuts usually aren’t much of a problem, but a greater health concern is deep bleeding inside the body, especially in the knees, ankles and elbows. Internal bleeding can damage organs and tissues and may be life-threatening.
Hemophilia is an inherited disorder, although in about one third of cases, the gene has spontaneously mutated. It affects mostly male children, who inherit the condition from their mothers. The US Centers for Disease Control and Prevention estimates that it occurs approximately in one of 5,000 live births. Treatment includes regular replacement of the specific clotting factor that is reduced.
April 17 is World Hemophilia Awareness Day
April 17 is the 29th World Hemophilia Day – a day to focus on outreach and identifying new members of the bleeding disorders community. Frédéric and his mother contacted The Review to raise awareness about the disorder.
Now 17 years old, Frédéric was diagnosed with hemophilia while in his mother’s womb. He has a moderate form of the condition but as he says, “It gives you boundaries.” An avid sportsman, he curls (his team has competed at the provincial level for the past three years), plays basketball, volleyball, and badminton, and participates in track and field and Ultimate Frisbee.
“I needed my doctor’s approval for the latter,” he notes. Absent from this list are the contact sports such as hockey and football, which are just too dangerous for someone with his condition.
His activities have taken a toll on his body. When he was 12 years old, he spent 10 days in hospital with a deteriorated hip after being hit with a soccer ball. He is daily reminded of his condition as his gums bleed when he brushes his teeth. One knee and one ankle are weaker than the others and his knees hurt a lot of the time. He must inject himself with a prophylaxis once a week to help his blood clot. And he cheerfully announces that “I have the body of a 60-year-old.”
Helping others, giving back
Frédéric enjoys working with kids and has accumulated 224 community service hours. He hopes to reach 300 hours by the end of this year. Ninety-five of those hours were spent coaching his sister’s curling team and in addition to maintaining good grades in school, he works 25 hours a week during the school year and works during the summer at McDonald’s.
This fall, Frédéric plans to head to university with a goal of becoming a teacher, working with those dealing with mental illness or disabilities. Helping others facing challenges is a cause close to his heart.
Whatever path he ends up following, it is clear that he will make the most of the opportunities which come his way. Hemophilia is a serious disorder but Frédéric is proof that it needn’t stop one from living life to the fullest.
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Her short fiction has been published in many Canadian literary magazines.Numerous humorous and non-fiction articles have been published in the Globe & Mail, Ottawa Citizen, Toronto Life and Toronto Star. She has also published two local histories and is the former Coordinator of the Creative Writing Program at Ryerson University.