Woman may be only person in Utah diagnosed with rare, deadly disease - KUTV

A young Davis County woman may be the only person in Utah diagnosed with a rare, degenerative disease that she described as a combination of some of life’s most challenging medical conditions. “It’s like Alzheimer’s, dementia and Parkinson’s,” said 21-year-old Morgan Hill, who has been fighting Niemann-Pick disease, for which — so far — there is no cure. As a little girl, Hill was in a performing dance group, but there were signs something was out of step. MORE: West Nile virus detected across multiple Davis County cities “We had taken a video of ... her playing in the backyard with the dogs, and she was stumbling all over the place,” said Jeannine Hill, Morgan’s mother. Tests and more tests finally led to an unfamiliar answer. “You know, it's pretty tough,” said Morgan’s father, Michael, who openly wondered if his young daughter’s dreams would come true. “I mean, there's things that we didn't think we'd ever have to do.” Every two weeks, Morgan and her mother fly to Chicago, where she gets infusions of a new drug at a hospital that specializes in Niemann-Pick. Her parents said the treatment gives Morgan more energy and allows her to eat on her own. She's also on a series of other meds, which in total could top $3.5 million a year. Michael has good insurance through his employer, which pays most of it. ”The cells are not functioning (properly), and they're not processing the fats and cholesterol,” Jeannine said. The disease is deadly, and the Hills are convinced it’s often misdiagnosed. They believe living with Niemann-Pick can be improved with early intervention. There may be no stopping the disease, but specialists, devoted parents, and a cheerful daughter can slow it. Despite the weight of Niemann-Pick, Morgan Hill’s spirit seems light. She said she’s happy, and when asked why, responded, "Just for life itself.” _____