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

What the report says

KUTV 2News reported July 23 that Morgan Hill, a 21-year-old woman from Davis County, Utah, may be the only person in the state diagnosed with Niemann-Pick disease, a rare and degenerative condition described by her family as deadly and without a cure. The report, filed from Layton, said Hill compared the illness to a combination of Alzheimer’s disease, dementia and Parkinson’s disease because of its effects on the body and brain.

According to KUTV, Hill showed signs of trouble as a child, including stumbling while playing, before repeated testing led doctors to the diagnosis. Her mother, Jeannine Hill, told the station the disease affects how cells process fats and cholesterol. Her father, Michael Hill, described the diagnosis as forcing the family to confront medical and personal challenges they had not expected for their daughter.

The family said Morgan and her mother travel every two weeks to Chicago for infusions of a newer medication at a hospital focused on Niemann-Pick treatment. Her parents told KUTV the infusions have helped Morgan have more energy and eat independently. The report said her combined medications could cost more than $3.5 million annually, with Michael Hill’s employer-provided insurance covering most of the expense.

The Hills told KUTV they believe the disease is often misdiagnosed and that earlier intervention can improve life for patients, even if the condition cannot be stopped. More broadly, Niemann-Pick is known as a rare disorder involving abnormal lipid storage, but KUTV’s report centered on one Utah family’s experience with diagnosis, treatment access and long-term care.