When most of us hear the word Alzheimer’s, we tend to think of beloved grandparents who have lived full lives, but whose memories have sadly eroded and bodies slowly deteriorated. We do not, however, think of vibrant young children who are just beginning their lives. But tragically, that is the heartbreaking story of 18-month-old Marian McGlocklin, who is suffering from an extraordinarily rare metabolic disorder called Niemann-Pick disease type C — also known as childhood Alzheimer’s.
The McGlocklin family has been fighting for Marian’s life since they first learned her diagnosed, and now, through a GoFundMe page they set up in her honor, they are hoping to raise $150k for research to help find a cure. Amazingly, they have already raised more than $50k in just one month, but they still have a ways to go before they meet their goal.
By sharing Marian’s story, the family also hopes to raise not just money, but also awareness.
“Family advocacy is so important because you can help give a voice to a disease that otherwise would not be heard,” Marian’s mom Sara tells Babble. “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.”
As the mother of a child with a rare and life-threatening disorder myself, I was especially struck by Marian’s story. I wanted to know what her mother wishes that the world could see in Marian before they see her disease.
“When I became pregnant with Marian, I felt this overwhelming sense of peacefulness and love, it was the most beautiful feeling,” Sara shared with me. “Marian loves to laugh and ‘dance’ to music. She loves ‘Row, Row, Row Your Boat,’ and even though she has mild speech and gross motor delays, she’ll reach out and grab my hands and rock herself back and forth with a big toothless/toothy grin.”
Life with a scary disease doesn’t stop this family from enjoying each other, though, or from living as close to a normal life as possible. According to Sara, Marian and her older sister Emily share a totally adorable if not completely typical sisterly relationship. Emily, who doesn’t know about the full details of Marian’s illness, has even started selling lemonade to raise funds to help her little sister.
“Marian loves her big sister Emily and will throw her head back laughing at her,” Sara says, adding that “the two sisters love each other so much and Marian will crawl over to Emily to give her a hug. 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.”
Niemann-Pick disease will eventually damage internal organs, but the cruelty of the disease doesn’t stop there. It renders children completely vulnerable to a slow neurological decline that leaves them unable to recognize their own mother’s voice; in effect, it causes severe dementia. To help spare Marian from this devastating end that can be a death sentence, the McGlocklin family has opted to enroll her in a program that uses an experimental drug called Cyclodextrin, which is not yet FDA approved and is still in clinical trials, to slow or stop the progress of this horrific disease.
In order for Marian to receive the drug, she must travel back and forth between California and Chicago once every two weeks in order to have a spinal tap, which is how the drug is given to her. As you might imagine, the travel costs associated with her care are adding up fast, and part of the funds being raised now are to help with those bills as well.
Despite their incredible hardship, there is one thing that’s clear about the McGlocklin family — they’re an amazing group of people filled with love, hope, and more strength than they ever probably thought imaginable.
If you would like to help the McGlocklin family care for their daughter, Marian, as well as fund research for a future cure, you can visit their GoFundMe Page right here. Every little bit counts.