Stories about: Dr. Luis Quinonez

Family Advocacy Day: Three families take their stories to Congress

Nova, who has Pfieffer syndrome, walks through a park.
Nova is taking her story to Congress

Later this June, three patients from Boston Children’s Hospital will be joining other kids and young adults from across the country at the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. During their visit, they will share their stories with Congress and ask them to protect all children’s access to health care.

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Lauren’s story: How roller derby saved my life

Lauren, who was born with ALCAPA, holds a sign about what roller derby is teaching her.I wasn’t a particularly athletic child. The second day of soccer practice, in sixth grade, we had to run laps around the soccer field, and 10-year-old me said, “I feel like I’m going to have a heart attack!” My coach disagreed. I quit. That much running was not for me.

Fifteen years later, at age 25, I had not only joined a roller derby league, but had also worked my way up to doing contact drills at practice in just three months. I felt incredible! I felt powerful! I felt unstoppable… until I went into cardiac arrest at a Thursday night practice this past July.

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Back in Kosovo after life-saving surgery, Lis’s heart remains in Boston

Lis, who had Kawasaki disease, poses for his birthday.Like many kids, Lis Spahiu loves wearing his Boston Celtics and New England Patriots t-shirts. His mom, Zana, jokes that sometimes she needs to hide them so he’ll wear something else. But Lis isn’t a typical Boston sports fan. This 5-year-old from Kosovo has grown to love Boston, and its sports teams, after several trips to the Boston Children’s Hospital to receive life-saving care for his heart.

“In Kosovo, the health care system is very poor,” explains Lis’s mom Zana. “So when Lis contracted Kawasaki disease at 5 months old, he was misdiagnosed.”

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