Little Marian McGlocklin is the youngest patient in the world to be receiving an investigative treatment for Alzheimer's.
At just over nine months old, this beautiful little girl was diagnosed with Niemann-Pick type C (NPC), which affects less than 3,000 children in the world. Those with the condition rarely live past the age of 10.
Marian's case is different though, she was already born with the developmental delays, so her progress in areas of speech and motor function have been really slow.
"We noticed Marian wasn't reaching certain milestones on time, at first doctors told us there was nothing wrong with her and it took seven months for us to finally get a diagnosis.
"She remembers who we are and doesn't have any of the advanced symptoms just yet, but she does have a few early symptoms including forgetfulness."
The fatal disease causes enlarged organs, loss of balance, muscle stiffness, dementia and difficulty speaking.
The baby's parents, Sara, 34, and Paul, 33, were heartbroken to hear of the diagnosis and terrified for her future. Thankfully, they found out about clinical trials in Chicago that might be able to improve the quality of their little girl's life.
How the parents found out, and what's in store for baby Marian, on the next page
"When she was around nine months old she learnt how to say 'hi' and 'bye' but suddenly one day stopped saying them regularly.
"We are so lucky that Marian has been allowed access to the investigative treatment, without it she would likely die which is terrifying." said Sara.
Although Marian is too young to be enrolled in the trial, she does get compassionate use of the drug, Cyclodextrin (VTS 270).
"Over the past few months she has really come to life, I didn't realise some of the things that she loved until she started the treatment."
Thanks to the treatment, little Marian has begun to get her memory back.
"And she is now using signs that she has learnt several times a day whereas before she would only remember them every couple of days."
Although there is no cure, the family hopes to raise awareness for Marian's condition, which is extremely underdiagnosed:
"The treatment she is undergoing isn't a cure, but hopefully due to medical advances she could be one of the first of her generation to survive the disease," said Sara,
"NPC is extremely underdiagnosed and we hope that more awareness will help to fight this awful disease."