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Teen's awareness bid for condition which left gran 'trapped in her body'

PUBLISHED: 17:25 21 November 2019 | UPDATED: 17:25 21 November 2019

Janet King passed away after a battle with progressive supranuclear palsy. PHOTO: Abbi Barrett

Janet King passed away after a battle with progressive supranuclear palsy. PHOTO: Abbi Barrett

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A teenager is bidding to raise awareness of a rare brain condition after the death of her grandmother.

Janet King passed away after a battle with progressive supranuclear palsy. PHOTO: Abbi BarrettJanet King passed away after a battle with progressive supranuclear palsy. PHOTO: Abbi Barrett

17-year-old Abbi Barrett has spoken out about progressive supranuclear palsy (PSP), a rare brain condition affecting around 4,000 people in the UK.

It comes after grandmother Janet Elizabeth King passed away on October 31.

The mother-of-two, with four grandchildren, battled the condition for more than two years.

Miss Barrett said: "She suffered from a very rare brain disorder. It is a really nasty condition, but it is so uncommon that the funding is all from fundraising.

"They become almost like a baby, and it affected her balance. She was always falling.

"She couldn't talk so she couldn't tell you what was wrong, and she could no longer swallow or eat so her food was liquidised.

"The one thing that continues to work is the mind, so they know exactly what is happening but become trapped in their own bodies with no control of anything."

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Other symptoms of PSP include changes in behvaiour, slowness of thought and an inability to control eye movement.

Miss Barrett said: "She was diagnosed about two years ago, but because of the condition being so unknown, they thought it was dementia.

"It took quite a while to get the right diagnosis.

"It is mostly misdiagnosed for Parkinson's."

Miss Barrett has since launched a GoFundMe page in memory of her grandmother, in the hope of raising vital funds to support the PSP Association, a charity providing support and information to those living with the condition, as well as funding research.

She said: "She was a quiet person, but she had such an infectious laugh.

"We would take her places and she would start laughing.

"She was a very lovely woman, and very family oriented.

"She lived a year longer than we thought, and she really wanted to go to London. Thankfully we took her and she had the time of her life."

To donate, go to www.gofundme.com/f/abbi039s-campaign-for-the-psp-association

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