Author: Jessica Cerretani

Fighting for Kennedy: Coping with moyamoya disease

Girl with moyamoya disease is thriving.

If you happen to be waiting in line at the supermarket with Kennedy Grace Cheshire, you’ll likely leave the store with a whole new group of friends. This outgoing five-year-old can’t resist introducing herself to her fellow shoppers — and then introducing them to each other. “She’s never met a stranger,” says her mother, Amber.

Kennedy, who lives in Texas, brought that playful attitude to the East Coast last year when she and her family arrived at Boston Children’s Hospital for evaluation and treatment.

At age two, she had been diagnosed with neurofibromatosis 1 (NF1), a genetic condition that causes symptoms including benign tumors that form from nerve tissue. The diagnosis wasn’t surprising: Kennedy’s father Robert has NF1, too. But a couple of years later, an MRI scan brought a shock.

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Second opinion for midaortic syndrome gives Cameron a second chance

midaortic syndrome

Cameron Grubb likes to shoot Nerf guns, and even his own doctors aren’t immune from his aim — in fact, they often fire back. It’s a playful act that everyone welcomes, however, particularly since this 6-year-old has defied the odds multiple times in his young life.

Just three years ago, Cameron was struggling to survive after being diagnosed with extremely high blood pressure — so elevated, in fact, that his clinicians in Kansas thought the monitor must be broken. When they eventually confirmed the reading, it was 170/140, a dangerous level that sent him to the local intensive care unit for nine days.

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Five things you might not know about epilepsy

epilepsy isn't just seizures

The classic image of epilepsy is of someone falling to the ground and shaking uncontrollably — but that stereotype isn’t always accurate, particularly in kids. Children are usually diagnosed after two or more unprovoked seizures, or after a single seizure if there’s a high chance of further ones. Yet this isn’t a one-size-fits-all condition, and seizure activity can change over time as young brains develop. We asked Dr. Phillip Pearl, director of the Epilepsy Center at Boston Children’s Hospital to share some more surprising facts about this condition.

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On the move: Lilith’s dramatic recovery from arteriovenous fistula

recovering from arteriovenous fistula , playing in the snow

It began like any typical late summer day. Lilith Borden and her mom, Victoria, had stopped by a farm near their Concord, New Hampshire, home where the 3-year-old could enjoy an ice cream cone — and burn off some energy playing in a nearby field.

“We were running through the grass, when Lilith suddenly grabbed the back of her neck and screamed that she had a boo-boo,” Victoria remembers. Within seconds, she seemed to have trouble moving. As Victoria called for help, the little girl collapsed to the ground.

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