An Idaho teenager is bravely fighting an extremely rare disease, often referred to as “Childhood Alzheimer’s.”
Kristen Wells, 17, was diagnosed with Niemann-Pick Type C (NPC) five years ago. It’s a disease that causes her body’s cells to attack each other, according to the National Center of Biotechnology Information.
In most parts of her body, the cells are able to reproduce and regenerate from the damage. The exception is her brain, where the cells don’t reproduce, which causes a gradual loss of neurological function.
About one in 150,000 people are diagnosed with NPC. It is always fatal and the earlier the onset of the disease, the shorter the life expectancy.
When Kristen was 12, she began showing signs of dyslexia. The Idaho Falls teenager slowly started losing things and everyday tasks became challenges.
“She was in one of her special education classes and a teacher noticed she knew how to do the math but she couldn’t get the order right,” said Lori Wells, Kristen’s mother.
Eventually, Kristen’s parents took her to a local doctor, who referred her to Primary Children’s Medical Center in Salt Lake City.
An MRI was ordered and the results weren’t good.
“When they came back with the MRI results, the cerebellum in her brain had degenerated,” Wells said. “(The) person who read it said (the MRI) looked like a person who’s been a drunk all their life.”
After nine months of tests, doctors diagnosed Kristen with the genetic disease.
Kristen’s parents are both carriers but they’re both adopted and had no idea NPC runs in both of their families.
“You never know you’re a carrier until two carriers come together and you get a child with the disease,” Wells said.
Statistically speaking, four of the Wells six children should have NPC but Kristen, the youngest, is the only one with the disease.
Because there’s no cure, she and her mother travel to the National Institute of Health in Washington D.C. every month to participate in studies.
Kristen’s medication costs about $1,700 a day, resulting in $620,000 every year for the drugs. Fortunately, for the Wells, insurance covers most of the cost but it does take a financial toll on the family.
“I look at that and just laugh, because there’s a house payment every day of the month,” Wells said.
A few years ago, the Make a Wish Foundation heard about Kristen and her desire to go Italy with her parents and all her siblings. The wish came true and for a week, she left her trials behind for the trip of a lifetime.