What was wrong with little Kacy? The 4-year-old girl with the spunky personality had several symptoms that seemed unrelated: sensitivity to light, dehydration, excessive thirst and urination, protein in her urine and rickets. She had stopped growing and vomited every morning.
Her mother, Jen Wyman, spent two weeks at Beaumont Hospital in Royal Oak with Kacy as a team of doctors tried to figure out what was wrong. Kacy's pediatrician and two other doctors took their medical books to a restaurant and searched through a list of obscure diseases and ailments, trying to unravel the mystery.
Kacy sat on her mother's lap as a doctor diagnosed her with cystinosis, a rare, genetic, metabolic disease that affects about 500 people in the U.S. and 2,000 worldwide. Without treatment, it was likely that Kacy would develop kidney failure by the time she was 9 or 10.