Author: Ellen Greenlaw

Against all odds: Colin’s biventricular repair

Colin, who had a biventricular repair, climbs onto the table during his office visit.

Catherine and Julio Pita were already seasoned parents when they learned they were expecting their sixth child. But when an ultrasound at Catherine’s 16-week prenatal visit showed their baby had a hole in his heart, they were surprised and unprepared.

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Summer movie safety: What parents of kids with epilepsy should know

People sitting in a dark theater

If you’re headed to the movies over this holiday week, a word of caution about the popular Disney sequel Incredibles 2. Earlier this month, the Epilepsy Foundation issued a statement about the film, warning that some people have had seizures while watching the movie. In response, some movie theaters have posted warnings about the film.

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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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SMA and Spinraza: A tale of two siblings

Kernan and Braeden Farrrell, who have spinal muscular atrophy, wave for the camera. When Kernan Farrell started falling and losing developmental milestones shortly before her second birthday, her parents, Kristen and Jim, knew the cause right away. Like her older brother, Braeden, she was born with the gene for spinal muscular atrophy (SMA), a rare genetic condition that causes weakening muscles throughout the body. They had been watching and waiting, wondering if and when Kernan might start showing signs of the condition.

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