Eighteen month old Marian McGlocklin was diagnosed with a rare, fatal disorder called Niemann-Pick disease type C--commonly known as childhood Alzheimer's.
This disease causes loss of speech and the muscles to get so stiff that eventually those afflicted with it to be unable to walk.
Her father Paul says the diagnosis was overwhelming for his family.
"To hear those words and know that something is wrong with her - it's devastating. It's something you just don't want to think about."
While the family is living with the sad reality of their daughter's health, they make sure to make the most of their time together.
Mom Sara says her daughters are the best of friends and Marian and four-year-old sister Emily are extremely close.
“Marian loves her big sister Emily and will throw her head back laughing at her... I’ll often walk into Emily’s room and see the two girls sitting down and playing tea party together or playing beauty parlor together.”
While Emily isn't fully aware of the extent of her sister's disease, she decided to create a lemonade stand to help pay for Marian's treatments.
Every two weeks, the family has to travel back and forth between California and Chicago so Marian can receive a spinal tap to get a does of Cyclodextrin.
This drug, while not FDA approved, is considered to be a highly effective clinical treatment.
The family is raising money to not only fund research to help find a cure, but Sara says to also raise awareness.
“Family advocacy is so important because you can help give a voice to a disease that otherwise would not be heard...what I keep coming back to is having a disease like NPC is rare, but having a rare disease or someone you love having a rare disease, unfortunately, is not rare.”
If you would like to donate to their page and learn more about Marian's story, check out their GoFundMe page here.
Listen to Jennifer's segment on this incredible family below!