Before she turned one, Marian McGlocklin was saying “hi” and “bye,” but forgot her first words as quickly as she learned them, leaving her parents desperately looking for answers.
They soon learned it wouldn’t just be her words their little girl will lose. Eventually, Marian – who was diagnosed with a terminal condition known as childhood Alzheimer’s – will lose mobility, her ability to laugh and play, and then she’ll lose her life.
Keep reading to learn more about this amazing little girl who’s been fighting since she was born!
Despite doctors insisting Marian McGlocklin was a healthy baby girl, her parents Sara and Paul knew there was something very wrong.
“A lot of times the approach is, ‘let’s wait and see,’ but I felt in my gut there was something happening, so we were pushing,” Sarah recently said in an interview with KTLA 5.
They weren’t wrong about their gut feeling.
After connecting with a “an amazing team at Children’s Hospital Los Angeles,” Marian – at 18 months – was diagnosed with the fatal metabolic condition Niemann Pick Type C (NPC), sometimes called childhood Alzheimer’s, which is always fatal.
The mom was at home with her two daughters when she got the call from a doctor, explaining her baby girl had a rare condition that would claim her life.
Sara writes, “I could hear my daughters laughing and playing in the next room. My oldest, Emily, who loves her sister fiercely, and then, Marian, who was giggling while I was learning she wouldn’t be growing up at all.”
The National Library of Medicine describes NPC as “an ultra-rare, progressive neurodegenerative disease with approximately [one] per million people in the United States.”
Babies born with NPC initially seem healthy and develop normally for variable periods of time, “and then something changes.”
As the disease progresses, subtle symptoms like clumsiness and minor developmental delays become more severe, including loss of muscle strength, choking, tremors and seizures.
“The disease takes everything. I didn’t know diseases like this even existed, not to mention strike children, our child,” the now mother of three shares.
“It turned our world upside down,” Sara says, adding the disease, which has no cure, is terminal. “But we realized she’s been fighting this since the day she was born we just didn’t know it.”
The little fighter
The California family isn’t willing to give up on their little girl.
Starting treatment early was crucial for Marian and without it, the unforgiving symptoms of the disease would have a stage to make their tragic show.
Shortly after she was diagnosed, Marian entered a clinical trial, a treatment injected into her back, like a lumbar puncture, twice a week.
Since Marian started the treatment in 2017, Sarah said Marian went from not being able to take a single step to walking across the room.
“The light came on in her. She went from being an observer of life to participating,” said Sara, adding that the drug will not halt the disease’s progression forever.
“To have hope and to have something that we can grab on to, it was a lifeline for us,” Marian’s dad said of the experimental drug, that according to Sara’s Facebook will be available on trial until at least 2025.
Marian’s dreams and wishes
Sharing Marian’s journey on social media, Sara writes in February 2022, “Marian told me when she grows up she’s going to live in Paris with her family and be an artist…Her dreams for herself don’t see her life end at age ten or fifteen. They don’t involve going backwards. Only forward. It’s Paris.”
Supported by her parents who are champions for raising NPC awareness, Marian, now eight, enjoys dancing, singing and baking.
Sara says, “Her favorite show is Pioneer Woman, and she sits watching raptly and says, ‘I wonder where Ladd is on the ranch today.’”
The Make-a-Wish Foundation gave Marian a magical wish, and for one day in February 2024, the young girl didn’t have to wonder where Ladd, the husband of the show’s host, was on the ranch.
She was right there with him and the Ree, the Pioneer Woman, on the Drummond Ranch in Oklahoma, where they baked chocolate sheet cake and were “best friends for the whole day.”
Hope for Marian
Though the family doesn’t know how long Marian will live, they are helping others by raising awareness and funds for research through the Hope for Marian Foundation.
“The disease will take her laugh, her smile, her memories, her songs, her voice. It will take away movement, dance recitals, birthday party games and hot chocolate nights. In its place will be suction machines, G-tubes, immobility, and a mini hospital unit in our living room. Ultimately, it will take the most precious thing of all: her life. It will take her,” Sara writes.
But with the medicine, for now at least, Marian, now big sister to Adam, is stronger than the NPC.
Marian is an inspiring young girl, and we hope she continues being stronger than the NPC.
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