Aimee Walker
A five-year-old girl has been told the drug which has saved her life is being discontinued in just six months’ time.
Marian McGlocklin has a fatal condition called Niemann-Pick Type C (NPC), also known as Childhood Alzheimer’s, and she depends on VTS-270/Adrabetadex.
But now the pharmaceutical company Mallinckrodt has revealed that the drug will no longer be distributed from October.
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The five-year-old began taking the medicine when she was aged just 19 months. Before the drug, she couldn’t walk, wouldn’t gain weight, and was often very weak.
In a piece for Scary Mommy, her mum Sarah wrote: “We didn’t know if she would live to be two years old due to her aggressive infantile version of NPC.
“But then, it was like a miracle. After only five treatments with VTS-270, she started walking and thriving.
“It gives her life, and without it, she won’t have one.”
To stop it from being discontinued, Marian’s mum has launched a fundraiser on GoFundMe to raise $150,000.
The money will be used to hire a team of experts that can help stop the drug from being cancelled.
Sarah added: “She dreams of her future, wants to get married, be a doctor, and follow her big sister around everywhere she goes for the rest of her life.”
Featured Image Credit: Sara McGlocklin
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