Jenna’s story: How two surgeons changed her path in life

Inspired by her own surgeries, Jenna dresses up as doctor

“Your daughter was a very sick little girl.” Those were the first words that came out of Dr. Peter Waters’ mouth as he addressed my parents in the waiting room of Boston Children’s Hospital, back in 1999. They had been anxiously waiting, wondering and worrying about my condition.

“Will they get it all?”

“Will she be the same?”

“Will she survive?”

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Looking at the whole child: Coordinated care for spina bifida helps Jeffrey thrive

8-year-old boy with spina bifida smiles at the camera

Jeffrey Marotz and his family may have driven to Boston Children’s Hospital from their home in New York, but it was really the boy’s feet that brought him here.

Born with severe spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain, Jeffrey had also been diagnosed with clubfoot, a related orthopedic condition that causes the foot to twist unnaturally.

Previous surgeries hadn’t worked and the braces that had been custom made for then three-year-old Jeffrey didn’t fit correctly. “Nothing was working,” says his mom, Michelle.

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Keeping the Beat: A retreat for kids with pacemakers and ICDs

Kids from the retreat get ready to zip line.
Photos by Richard Koch

Every year in early September, something extraordinary happens at the YMCA Camp Burgess on Cape Cod. That’s when a group of kids with pacemakers and implantable cardioverter defibrillators (ICDs) descend on the campground for the Keeping the Beat Retreat, a weekend filled with games, outdoor activities, dancing, singing and bonding. This year, I was lucky enough to get to join in on their fun as a volunteer counselor.

The weekend began with hugs, high-fives and screams of excitement as the kids piled off the bus and connected with old friends and former counselors. As a first-timer, I was clearly in the minority. Many of the kids have been attending the retreat for years, some since it began in 1999.

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Enjoying life, finally free of seizures

surgery for seizures

Kristen Grip stood in the middle of the basketball court, motionless. Around her, the action continued as usual — the smack of the ball on the polished wood floor, the rush of her teammates as they darted back and forth, the satisfying swish and shout of victory as someone made a basket. Yet the high school freshman stared vacantly into space, her only movement a small tap of her fingers together.

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