- Associated Press - Sunday, August 3, 2014

ELIZABETHTOWN, Pa. (AP) - Kennedy Stevenson is a sprite of a child, who gazes at the world around her with serious blue eyes.

Three years old, she has an extremely rare metabolic disorder called S-adenosylhomocysteine hydrolase deficiency, or AdoHcy.

Many parents see their child as one in a million.

“Kennedy,” says her mother, Donya McCoy, “is literally one in a billion.”

The Elizabethtown girl is one of just eight people in the world who have the same enzyme deficiency.

And because her disorder is so rare, her mother has had to be tenacious and enterprising in her unending quest to get Kennedy medical care.

“Every little step is a battle in this huge war of saving her life,” McCoy says.

AWESOME CHILD

Kennedy has a petite frame and spindly legs; her diet is severely limited, so she is significantly underweight.

Her feet turn inward, so she wears orthotics, even, sometimes, with her pink Minnie Mouse flip-flops.

Her second toe on each foot is raised (“They have no idea why,” her mother says).

Her brain development, her muscles, her nervous system, her liver - all have been impacted by her metabolic disorder.

But Kennedy has learned to say a few words: Mommy, Dada, Wawa (her stepfather), Sissy (her adored and adoring stepsister), “Love you.”

She dances when her mother calls for a dance break, and she recently learned to walk, albeit with a stiff, wide-legged gait.

When her mother insists on holding her hand when walking on a gravel driveway, she throws herself on the grass, looking for all the world like an ordinary toddler, having an ordinary toddler’s temper tantrum.

Story Continues →