Children's Alzheimer's: What it is and how you can help

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KNOXVILLE, Tenn. (WVLT) -- Two-year-old Marian McGlocklin has lived a love-filled life in California.

"She loves music and dancing and eating," her mom, Sara McGlocklin, said.

Marian's mom said her daughter loves life, but seven months ago, her family got some bad news.

"In February, we got the most devastating news of an early warning signs of a fatal disease, also known as children's Alzheimer's."

Niemann–Pick type C is a genetic disease that doctors said causes the body to break down, and it has caused memory loss. There's no cure, and a diagnosis is fatal.

"It was the worst feeling in the world," McGlocklin said. "The bad times are when I look at her and think, 'I want to take a picture of this because she may not be here anymore.'"

Local 8 News reached out to pediatric neurologist Dr. Denia Ramirez at UT Medical Center. She said she has seen three patients in her 20-year career who were diagnosed with the disease.

"They look like they're drunk," Dr. Ramirez said. "They lose the ability to walk. They have slurred speech. They are unable to be understood. Plus, they have difficulty with swallowing."

With few options to turn to, Marian's mom created the "no pucker challenge" in August to raise awareness and money to find a cure. People across the nation took pictures of themselves eating a lemon and not puckering, using the hashtag #nopuckerchallenge.

"It's a little fun and uplifting, and hopefully it will reach people who have never heard of Niemann–Pick type C before," McGlocklin said.

Marian's mom said she hopes the challenge will save her little girl's life, along with the lives of other kids who have been diagnosed with the disease.

Marian began undergoing an experimental treatment that includes spinal taps every two weeks. Before the treatment, Marian's mom said the little girl was unable to walk, but the treatment has enabled her to walk again. However, McGlocklin said her daughter will have to undergo the treatments indefinitely, or until another solution has been discovered.