Sunday, July 22, 2001

A lifetime of bravery in 3 years <<




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        Grandparents are rarely the most accurate source of information about their grandchildren. People who are otherwise quite sensible turn gooey. They start flinging around words such as “cutest“ and “sweetest” and “brightest.”

        Sarah Phillips' grandparents also think she's the bravest.

        They might be right.

        Before Sarah was born, she suffered a stroke. Sue and Bob Phillips could hear their newborn daughter struggling for breath in the delivery room. This was the Phillips' first hint of things to come.

        After several weeks in Good Samaritan Hospital's intensive care unit for infants, Sarah went home to Fairfield three years ago. Besides the prenatal stroke, which hindered motor skills, Sarah was diagnosed with Pierre Robin syndrome. Her small lower jaw crowded her tongue making it tough to breathe and nearly impossible to eat. A feeding tube was surgically installed.

"The double whammy'

        Oh, and Sarah also has Turner's syndrome, which means she has to take human growth hormones to achieve normal stature. “The double whammy,” her grandfather, Don Phillips, says, shaking his head.

        With admiration.

        “She is so responsive to all these doctors doing their miracles,” he says. Surgery four times. MRIs. An alphabet soup of other tests. Probed, prodded. She has three kinds of therapy for an hour every week. The growth hormone is administered by syringe.

        At bedtime.

        Now, think about how hard it is to get kids to agree to bedtime anyway. Add to that a nightly appointment with a needle. That started last December. “We dreaded it, but she has made it so easy for us,” her grandmother Ruth Phillips says. “Sticks her little hiney in the air and counts to six.” The injection takes six seconds.

        Brave. A brave little girl.

        And bright as a penny. Ruth and Don were right about that, too. Sarah still speaks with difficulty, sometimes signing instead. So, at age 3, she is bilingual. She also has a taste for music, in particular the Irish Tenors. Sarah shows me the well-used liner notes from one of their CDs, pointing to her favorite, Ronan Tynan.

        “I luf them,” she says.

Beauty and spirit

        I don't know much about these tenors, but I'll bet if they met Sarah, they'd “luf” her right back. Nature, which piled on so many challenges for this little person, rewarded her with exceptional beauty and indomitable spirit.

        “Scientifically,” Sue says, “she shouldn't be walking.”

        Sarah flashes a brilliant smile and walks a few steps, unassisted, to her grandfather. She also makes her way around with miniature crutches and a walker. These are hard-won skills, much celebrated by her family.

        They are delighted by who she is, excited to see who she'll become. “We're so lucky,” Don says. “We haven't hit any walls yet.”

        We.

        There is something about this little girl that makes you want to play on her team. Or live your life with such grace that you might one day be in her league. Uncomplaining in the face of enormous challenge. Gallant. Determined.

        “She is just so special,” Ruth says. “An inspiration.”

        And even though Ruth is Sarah's grandma, I think she might be right.
        E-mail lpulfer@enquirer.com. Past columns at Enquirer.com/columns/pulfer.

       



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