Taking steps towards Rett syndrome awareness

Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year. On October 22, families from around Massachusetts came together to climb the steps of Gordon Hall at Harvard Medical School to symbolize their daily struggle and hope for the future. A few of those families share what Blue Sky Day means to them. 

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Genetic cancer risk: Should your child be tested?

A doctor examines a toddler in the office
Dr. Junne Kamihara examines a patient [PHOTO: SAM OGDEN/DANA FARBER]

If your child could be at risk for cancer, the sooner you discover that risk, the more you can do to prevent cancer or catch it in an early stage. Not every child needs to be tested, so it’s important to learn what genetic testing is and whether it’s the right decision for you and your child.

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After heart surgery, Chris reaches new goals one step at a time

Chris, who had heart valve surgery as an adult, runs a half marathon.
Chris runs the Newburyport half marathon in 2016 [PHOTO: RACEWIRE]
Many people approach training for a triathlon as a chore, something they have to endure to reach their ultimate goal. But for Chris Wagner, training is a pleasure — one he doesn’t take for granted.

“The idea that I can get up on a given Saturday and go out and run 10 miles is a real gift,” he says. “I wake up in the morning and think, ‘I get to do this.’”

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Edleigh’s story: A repaired mitral valve, a happy toddler

Eddie, who had heart valve surgery, poses with her stuffed dog Prudence
PHOTOS COURTESY OF THE PLAISTED FAMILY

Edleigh “Eddie” Plaisted is only 15 months old, but already cares for her own ward of patients, including Whalen, Ruffus and Prudence. Her stuffed animals are in good hands — Eddie has spent enough time around doctors and nurses to know how to keep her charges happy.

Eddie’s own medical care began before she was even born, when she was diagnosed prenatally with several congenital heart defects at her local hospital in Minnesota.

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