Marian McGlocklin, a young girl with an incredible fighting spirit, has been battling childhood Alzheimer’s since birth. This rare and terminal condition, known as Niemann Pick Type C (NPC), gradually robs her of her abilities and will ultimately take her life. Despite the devastating diagnosis, Marian and her family refuse to give up hope. They have been sharing their journey to raise awareness about NPC and fund research through the Hope for Marian Foundation.
A Gut Feeling
Since Marian’s birth, her parents, Sara and Paul, knew that something wasn’t right. Even though doctors initially dismissed their concerns, Sarah’s instinct told her otherwise. She pushed for answers and eventually found an amazing team at Children’s Hospital Los Angeles who were able to diagnose Marian at just 18 months old.
Childhood Alzheimer’s
NPC, often referred to as childhood Alzheimer’s, is an incredibly rare and progressive neurodegenerative disease. Babies born with NPC appear healthy at first, but as time goes on, symptoms start to emerge. These symptoms include developmental delays, loss of muscle strength, choking, tremors, and seizures. The disease takes away everything from the affected children, leaving them and their families devastated.
A Little Fighter
Marian’s family decided to take action and seek treatment for their little girl. They enrolled her in a clinical trial, where she receives injections twice a week. Since starting the treatment, Marian has shown remarkable progress. She has gone from being unable to take a single step to walking across the room. While the treatment is not a cure, it has given Marian and her family a lifeline of hope.
Dreams and Wishes
Despite the challenges she faces, Marian continues to dream big. She dreams of growing up, living in Paris with her family, and becoming an artist. Her dreams don’t involve limitations or going backward; they are all about moving forward. Marian’s parents support her every step of the way and cherish every moment they spend together. They have even made her dream come true by organizing a special day with the Pioneer Woman on the Drummond Ranch in Oklahoma.
Hope for Marian
Although no one knows how long Marian will live, her family remains determined to make a difference. They are raising awareness and funds for research through the Hope for Marian Foundation. They want to ensure that other families facing NPC have access to the support and resources they need.
Marian’s journey is both heartbreaking and inspiring. She teaches us the importance of cherishing every moment and never giving up hope. Let’s come together to support Marian and the countless other children fighting NPC. Share her story and join the fight for a better future.
