Stories about: Craniofacial Program

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.

Read Full Story

A happy return: Catching up with Eva

The Ramirez family pose in Boston.It’s about 2,400 miles from Salt Lake City to Boston. But it’s a distance Jennifer and Vincent Ramirez are more than happy to travel to get care for their daughter Eva. The family first traveled to Boston Children’s Hospital in January of 2016 for surgery to remove Eva’s encephalocele — a surgery her doctors in Utah had said wasn’t possible.

This spring, the family was back in Boston for a follow-up visit with the surgeons who performed her surgery, Dr. Mark Proctor, neurosurgeon-in-chief, and Dr. John Meara, plastic-surgeon-in-chief.

For this visit, Jennifer and Vincent had decided to bring along their two older children, Violet, 7, and Vincent, 5, and make a family vacation of the trip, catching a Red Sox game and spending a slightly chilly day at the beach.

Read Full Story

Paying it forward: Care for son’s craniosynostosis spurs mom to run marathon

craniosynostosis

Will Flanigan can’t stop giggling. Whether he’s teasing his older sister, Spencer, or charming his way out of trouble with his parents, this toddler “is always cracking himself — and us — up,” says his mother, Caroline. “We call him Will the Thrill.”

On April 17, 2017, Will brought his good humor from his home in Dallas to the Boston Marathon finish line, where he joined his family in cheering on Caroline as she ran. But this wasn’t just any race. Caroline was running with Boston Children’s Hospital’s Miles for Miracles team for a very special reason: Almost exactly a year earlier, Will was a patient at Boston Children’s.

Read Full Story

A new life for Lynkin after encephalocele surgery

Toddler with big personality is thriving after encephalocele surgery.When you meet Lynkin Bell, the first things you notice are her big personality and chubby cheeks. You might also see how she adores her brother Lukis and hamming it up for the camera. But you’d never guess that this playful 14-month-old from Texas wasn’t expected to survive, never mind talk, stand or play peekaboo like a pro.

And yet, thanks to her parents’ faith and persistence — and surgery at Boston Children’s Hospital — Lynkin can do all those things, and lots more, with the gusto befitting any toddler her age.

“It’s a miracle,” says Kaylen Gaston, Lynkin’s mom. “We were told so many times she wouldn’t make it, and here she is defying all odds.”

Read Full Story