Marian is just two years old and already has a pretty bleak prognosis. She has been diagnosed with a horrible disease called Niemann-Pick Type C. This disease’s nickname—childhood Alzheimer’s—tells all.
Childhood Alzheimer’s is extremely rare and difficult to diagnose, but when it is diagnosed, it is a major tragedy for all involved. It attacks the organs and nervous system, meaning the body and brain have a hard time communicating with one another. It also means that anyone who has it will eventually “forget” how to do all the things they were once able to do, simply because their bodies cannot receive and react to the brain’s messages.
Marian is going through physical therapy and other treatments to help her keep the ability to walk, talk, hold things, and more. But unless a cure is found soon, it will be too late for her. Childhood Alzheimer’s will steal everything from her, including, eventually, her life.
In an effort to find a cure for her, friends and family have developed the “no-pucker challenge.” Their goal was to pick something difficult to do (for example, you may recall the ice bucket challenge or the cinnamon challenge) that would quickly spread on Facebook and other social media sites. Along with the challenge, the message that Marian is in need of donations to fund the research that could make her cure a reality would also spread.
Can you put a slice of lemon in your mouth and eat it without making a “pucker” face? We bet you can’t. But either way, it’s not a bad idea to share an image or video of your attempt on Facebook to help researchers find a cure for Marian and other youngsters like her. And don’t forget to share this post as well!
While Marian’s disease is not the same as traditional Alzheimer’s, it shares many similarities with Alzheimer’s disease, leading some to believe that finding effective treatments or a cure for one may assist researchers in developing treatments or a cure for the other. Click here to learn how you can contribute to Alzheimer’s research and care.
Check out the video below to see Marian in action. This sweet toddler is sure to melt even the stoniest of hearts!
Elizabeth Nelson is a wordsmith, an alumna of Aquinas College in Grand Rapids, a four-leaf-clover finder, and a grammar connoisseur. She has lived in west Michigan since age four but loves to travel to new (and old) places. In her free time, she. . . wait, what’s free time?