Fighting for Kennedy: Coping with moyamoya disease

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. Along with NF1, Kennedy also has moyamoya disease. In this rare but very serious condition, the walls of the carotid arteries that supply blood to the brain become thickened and narrowed. This can increase the risk of blood clots and, in turn, stroke. An even greater shock came when Kennedy’s doctor in Texas told her parents that there was nothing he could do to treat her surgically until she had already had a stroke. “She was only four years old. That wasn’t acceptable to us,” says her mother. On the two-hour drive home from their local hospital, she and Robert made a decision: They would do whatever it took to help their daughter. “I’m the type of person who lo...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Dr. Edward Smith moyamoya Moyamoya Disease Program Source Type: news