Stories about: Children’s Spina Bifida Clinic

‘Spina bifida is a diagnosis, not a destiny’

(Photo courtesy of Amanda Kern Photography)

In February, when New Englanders have long since wearied of the icy, mud-caked snow piles, an 11-year-old from Florida is seeing it — in all its splendor — for the first time.

And it’s magical.

“I can’t believe it! I never thought I’d get to see anything like this.”

There is a lot Adam Paul, now 14, wasn’t certain he would see or do.

Adam was born with spina bifida.

“I had to grow up a lot faster,” says Adam. “I had to think — What is going to happen to me? What am I going to have to go through today?

Spina bifida – a term meaning “split spine” – happens when the brain, spinal cord and/or meninges (protective covering around the brain and spinal cord) do not completely develop. It is the most common neural tube defect (NTD) in the U.S.

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Best foot forward

The Packards

The Packards gather around the boulder in their backyard to pose for the picture. Katie passes her bright pink crutches to her mother, and although she needs them to get many places in her life—from school to hip-hop dance class, she’s able to lean against this rock without them.

The photos go well, of course, because the Packard family—mom Cara, dad Brian, brothers Dan and Kevin and sister Laura—is so tightly knit. They’ve come together in ways small and large to help Katie navigate life with spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain.

But once the photo shoot is over, the rest of the family scatters across the backyard while Katie is still leaning.

“Mom,” she calls, “can you hand me my crutches?”

There she is, a 12-year-old girl, balanced precariously on the edge of the rock, stuck between childhood and adolescence, independence and dependence—between the desire for a regular life and the reality that there are simply things her body can’t do.

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