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.
Morgan Hill, 21, is fighting Niemann-Pick disease, a condition for which there is currently no cure. Hill has described the experience as being similar to Alzheimer’s, dementia, and Parkinson’s.
The disease causes cells to fail in properly processing fats and cholesterol, according to Hill's mother, Jeannine Hill.
Signs of the condition appeared during Hill's childhood. Her mother noted that video footage showed Hill stumbling while playing in a backyard with dogs. After various tests, the family received the diagnosis of Niemann-Pick.
To manage the condition, Morgan and her mother travel to Chicago every two weeks for infusions of a new drug at a hospital specializing in Niemann-Pick. Her parents stated that this treatment provides Morgan with more energy and helps her eat independently.
The cost of medical care is significant. Hill is taking a series of medications that could total over $3.5 million annually. Her father, Michael, stated that his employer provides insurance that covers most of the costs.
The Hill family believes the deadly disease is often misdiagnosed and that early intervention can improve life with the condition. While the disease may not be stoppable, specialists and family efforts can help slow its progression.
Despite the challenges of Niemann-Pick, Hill stated she remains happy, attributing her outlook to life itself.
