Family Raises Funds For Cure For Toddler With Childhood Alzheimer’s

Big Sister, Emily is raising funds for her 18-month old sister, Marian, who was diagnosed with a fatal genetic disorder called Niemann-Pick disease type C, which is sometimes referred to as childhood Alzheimer’s.

Dr. Patricia Dickson, chief of medical genetics at Harbor UCLA Medical Center says “Eventually the muscles get stiff and the patients are unable to walk. Speech becomes extremely difficult and eventually they do die from their condition,” said

The diagnosis was a complete shock for the McGlocklin family. Father, Paul McGlocklin said that his daughter is a very happy, active and friendly child. “To hear those words and know that something is wrong with her – it’s devastating. It’s something you just don’t want to think about,” he said.

Fundraising for a clinical treatment that could slow the progression of the disorder has however given the family hope.

“We really want to raise money to help fund further research, to find a cure and spread awareness,” Mom Sara McGlocklin said.

The family has raised more than $50,000 for Hope for Marian in just a month through various mediums. Genetic researchers say that this type of family-driven funding is what pushes science forward!

“The partnership of families and science is something that is really valuable and has pushed the field forward far faster than it otherwise would have gone,” Dickson said.

The family hopes Marian is either the last child to die from the disease or the first one to survive it.