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Choices are important to the Cleghorn family. Before their son Nicolas was born, Tracy and Lance Cleghorn envisioned a world of possibilities for him. “I want him to do whatever he wants to do, whether that’s play football, play rugby, place lacrosse…” says Tracy. “I want him to make that choice. I don’t want that choice made for him.”

But Nicolas was born with hemophilia and his choices became limited. He had a life-threatening bleed in his spine at 11 months and was hospitalized for five weeks. After his hospitalization, Nicolas was put on prophylaxis, medical treatment that would prevent future bleeds. Because he was so small, instead of injecting the medicine into his veins he was fitted with a portacath, a permanent device implanted into his chest that would allow medication to be administered directly into his bloodstream.

Five years later, life with hemophilia is all Nicolas knows, and it’s time for him to make his own choices. After a trip to summer camp and the realization that not everyone wears a portacath like him, six-year-old Nicolas asked to have his port removed. He is now getting medication injected directly into his veins. And while his illness is still distressing to the adults around him, he’s cool as a cucumber. While his father talks about their injection routine, Nicolas, sitting in Tracy’s lap, smiles and points out a vein. Despite his parents’ worries, he’s found his own kind of freedom.

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