Courage to be herself

Mid-way through her pregnancy 11 years ago, Bobbi McGrath knew something was wrong. Pregnant two times before, she wasn’t gaining nearly as much weight as she had previously.

Doctors assured McGrath her child was not under distress. In fact, when her daughter Kelly was born four weeks early weighing only 2 pounds, 13 ounces, Kelly’s lungs were completely formed and she lacked any serious health concerns.

“I was kind of like what’s going on, everything seemed sort of flipped upside down,” says McGrath, of Wheaton.

A week later a geneticist diagnosed Kelly with Russell-Silver Syndrome, a growth disorder characterized by low birth weight without catch-up growth and normal head size for age, a triangular face, persistent short stature and feeding difficulties.

Today, after years of feeding tubes and a surgery to minimize the reflux that caused Kelly to throw up most of what she ate, the 11-year-old is a more daring eater than her two older brothers.

“She loves all kinds of food, she’s really a salty person, but also loves chocolate,” McGrath says."She can’t eat a lot of simple sugars because her body creates more sugar than you or I.”

While Kelly’s size may be small, her courage is not. On the first day of school she announced to her class that sometimes she needs a snack to maintain her blood sugar, McGrath says.

Further, Kelly is not afraid to tell question-asking strangers why she’s small, why one side of her body is larger than the other or why she wears a shoe lift.

“She’s totally aware that she’s different and accepts it on most days,” McGrath says."If people are asking questions I’ve taught her to answer them with short, truthful answers and if they want to keep asking, keep answering because they’re probably not being mean, they’re just curious.”

The sense of empowerment Kelly gains by controlling her personal information is enhanced by the respect she receives from the adults managing her condition.

“Children need to have a voice in their care so that when they’re done they can look back and know they’ve had some choices,” McGrath says.

No doubt, some of those choices can be difficult—such as the one to suppress puberty to extend Kelly’s time to grow—but the challenges of living with a medical condition has given the family a unique perspective.

“It really gives my whole family an awareness that there are lots of kids out there with medical problems that you might not notice or understand, but it’s OK to be friends with those kids because they’re struggling through things and it’s not so scary,” McGrath says.

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