Wednesday, August 1, 2012

'People with disabilities want what most of us do... they want to fit in, they want love, a purpose in life and respect'

Laura Schutz and her father, Louis, show off a monster walleye Laura caught during a fishing trip to Lac Seul in northwestern Ontario, Canada. Laura caught more than 40 world-class walleyes the first afternoon on the water. “She easily out-fished the guide, another friend in the boat and myself,” Louis said. “We dubbed her the ‘Walleye Whisperer,’ and she continued for the entire week to outfish us all.” Photo courtesy of Louis Schutz
Louis Schutz of Skokie, Ill., writes in the Summer 2012 issue of Apostrophe about the joys and sorrows, triumphs and tussles he and his wife, Judy, experienced raising a daughter with Prader Willi syndrome. 

Born three weeks late with a 'failure to thrive' diagnosis, Laura was immediately whisked away by nurses, Schutz recalls. It was hours before I was able to hold her — an ominous beginning to what would become a lifelong struggle. 

Weak muscled (hypotonia) and not wanting or able to eat for five months (a strange twist of fate as it turns out), our beautiful blond-haired daughter was not doing well. Scoffed at by doctors, we knew something was wrong and vigorously pursued further testing and treatments for years, searching for a diagnosis. Physical, occupational and speech therapy were the daily routine for years. Just by luck they were the right things to do. One brain scan showed she had brain tumors and was missing her corpus callosum. A later test proved that diagnosis 100 percent wrong.

It would be three more long, torturous years and thousands of dollars of multiple failed medical tests to give us the proper diagnosis of Prader Willi (PW)syndrome — a rare genetic disorder affecting one in 15,000. Now you can get a more exacting genetic test to confirm this. Think Down syndrome with more weird twists. Left to her own, she will eat herself to death. She is however among the first generation getting proper medical care with 24-hour supervision.

Read Louis' story beginning on page 10 of Apostrophe

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