Toddler Stricken with Childhood Alzheimer’s – A Poignant Tale

In the field of childhood diseases, few are as heartbreaking and profound as Niemann-Pick type C (NPC), often referred to as childhood Alzheimer’s disease. This rare and aggressive disorder sneaks up on families’ lives, leaving them to grapple with a prognosis that is as devastating as it is certain. NPC is not just a medical diagnosis; it becomes a transformative experience that reshapes every aspect of family life, bringing both unimaginable challenges and unexpected moments of grace.

From the onset of the first symptoms to the eventual diagnosis, parents of children with NPC experience a tumultuous journey full of uncertainty, anxiety, and a desperate search for answers. These initial symptoms are often subtle, misleading doctors and leaving parents feeling isolated in their concerns. The rarity of this disease only adds to these challenges, making it difficult to find immediate support or resources that can shed light on what lies ahead.

By the time she was a year old, Marian McGlocklin was saying “hello” and “goodbye,” but she forgot her first words as quickly as she learned them, leaving her parents scrambling for answers.

They soon learned that it wouldn’t just be her words that their little girl would lose. Eventually, Marian – diagnosed with a terminal condition known as childhood Alzheimer’s disease – loses her mobility, ability to laugh and play, and then her life.

Keep reading to learn more about this amazing little girl who has been fighting since birth!
Although doctors insisted Marian McGlocklin was a healthy little girl, her parents Sara and Paul knew something was very wrong.

“A lot of times the attitude is, ‘let’s wait and see,’ but I felt in my gut that something was going on, so we pushed,” Sarah told KTLA 5 recently. They weren’t wrong about their gut feeling.

After connecting with the “amazing team at Children’s Hospital Los Angeles,” Marian was diagnosed — at 18 months — with the fatal metabolic condition Niemann Pick. Type C (NPC), sometimes called childhood Alzheimer’s disease, which is always fatal.

A mother was at home with her two daughters when a doctor called her and explained that her little girl had a rare condition that would claim her life.

 
 
 
 
 
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A post shared by Sara + Marian (@hopeformarian)

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 giggled as I learned she would never grow up.” “

The National Library of Medicine describes

NPC is an “ultra rare, progressive neurodegenerative disease with

approximately lone] per million people in the United States.”

Children born with NPC initially appear healthy and develop normally for varying periods of time, “and then something changes.”

As the disease progresses, subtle symptoms such as 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 such diseases even existed, not to mention the children on strike, our child,” the mother of three now shares.

“It turned our world upside down,” says Sara, adding that the disease, for which there is no cure, is incurable. “But we realized she’s been fighting it since she was born, we just didn’t know it.

Little Warrior

A California family doesn’t want to give up their baby girl.

Early treatment was essential for Mariano, and without it, the merciless symptoms of the disease would have staged a tragic show.

Shortly after being diagnosed, Marian entered a clinical trial where she was injected into her back twice a week as a lumbar puncture.

Since Marian began treatment in 2017, Sarah said Marian has gone from not being able to take a single step to walking across the room.

“A light came on in her. She went from being an observer of life to a participant,” Sara said, adding that the drug won’t halt the disease’s progression forever.

“Having hope and having something to hold on to was a lifeline for us,” Mariana’s dad said of the experimental drug, which, according to Sárin’s Facebook, will be available for testing at least until 2025.

Marian’s dreams and wishes

Sara shared Marian’s journey on social media in February 2022, writing: “Marian told me that when she grows up, she will live in Paris with her family and be an artist…Her dreams for herself don’t stop at age. ten or fifteen. They do not include the way back.

With the support of her parents, who are champions of raising awareness about NPC, Marian, now eight, loves to dance, sing and bake.

Sara says, “Her favorite show is Pioneer Woman, and she sits and watches with interest and says, ‘I wonder where Ladd is at the ranch today.

The Make-a-Wish Foundation granted Marian a magical wish, and for one day in February 2024, the young girl didn’t have to wonder where Ladd, the host’s husband, was at the ranch.

She was right there with him and Ree, the pioneer, at the Drummond Ranch in Oklahoma, where they baked chocolate cake and were “best friends for the day.”

Hope for Marian

Although the family does not know how long Marian will live, they are helping others by raising awareness and funding research through the Hope for Marian Foundation.

“The disease will take away her laughter, her smile, her memories, her songs, her voice. It will take away her movement, dance recitals, birthday parties, and hot chocolate nights. In its place will be suction cups, G-tubes, immobility, and a mini hospital unit in our living room. Eventually it will it will take the most precious thing of all: it will take her life,” writes Sara.

But with the cure, at least for now, Marian, now Adam’s big sister, is stronger than the NPC.

Marian is an inspiring young girl and we hope she continues to be stronger than NPC.

What do you think of this adorable little girl and her battle? Let us know your comments and then share this story to hear what others are saying!

Marian McGlocklin’s journey is not just a story of heartbreaking challenges, but a powerful testament to the resilience of the human spirit and the transformative power of hope and medical innovation. Despite the dire prognosis of Niemann-Pick Type C, Marian’s story illuminates the power of love and the determination of a family that refuses to give in to despair. Through tireless advocacy and unwavering support, her parents not only gave Marian a fighting chance but also lit the way for other families dealing with similar devastating diagnoses.

By sharing Marian’s story, her family has sparked a wider conversation about rare diseases and the critical need for research and funding. Every step Marian takes, every laugh she shares, and every day she lives beyond expectations, she challenges our understanding of medical limitations and redefines what is possible.

As the community rallies around Marian and her family, their story serves as a beacon of hope for many, highlighting the importance of access to experimental treatments, the potential they hold,3456 and the lives they can touch. Marianne’s dreams of Paris and her zest for life remind us all to cherish every moment and keep pushing the boundaries of hope and science. The world is watching, inspired by the courage of a little girl and the love of family, hoping for a future where no disease is too big to fight and no patient too small to matter.

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