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Meet Marian McGlocklin
Marian’s diagnosis in 2017 led to the creation of the Hope For Marian Foundation, which... supports hundreds of Niemann-Pick Type C families through advancing disease awareness, patient advocacy, and access to medicine.
Marian McGlocklin was diagnosed with fatal Niemann Pick Type C at 18 months old. Thanks to one of the experimental medications that is now at risk, today she is 8 years old.
Read about Marian’s early journey at diagnosis through her mom, SARA’S BLOG and follow along at @HOPEFORMARIAN. Or click the link below to read the personal stories of those living with NPC.
Marian’s Journey
THE BEGINNING
Marian was born on August 26, 2015. By nine months, it was clear that she was behind on physical milestones, so her parents consulted with neurologists and began a rigorous routine of diagnostics and testing.
THE DIAGNOSIS
In early 2017, their worst fears were realized when doctors finally diagnosed Marian with Niemann-Pick Type C, also known as “Childhood Alzheimer’s”.
THE MEDICATION
Shortly after diagnosis, the McGlocklins found hope and the path to Marian’s survival through an experimental treatment. Marian receives this critical lifeline every two weeks through a spinal tap at Children’s Hospital Los Angeles.
A TIMELINE OF THE MEDICATION AT WORK
August 2015
At birth, Marian showed hypotonia and an enlarged spleen/liver, which wasn't caught until she was close to a year old. She choked frequently on her bottle and suffered extreme fatigue and struggled to gain weight.
She began falling behind her gross motor milestones by 6 months of age, beginning PT and feeding therapy before her first birthday.
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“These early months after treatment were a miracle to see Marian come to life again. At 20 months, Marian could not take a single step. At 23 months and after eight treatments, she could very proudly walk across the room.”
SARA MCGLOCKLIN, MARIAN’S MOM & FOUNDER OF HOPE FOR MARIAN
Ways You Can Help
DONATE
Your donation will support patient access to medication and information as well as treatment research and development.
CURRENT INITIATIVES
Educating yourself on our current initiatives will help keep you up-to-date on the ever-changing landscape of treatment.
OUR STORIES
Reading stories of the people and their families who are affected by NPC will help you to understand what they are facing.