More than £3,000 raised for teen with rare genetic condition

16-year-old Olivia Windle who has juvenile batten disease.16-year-old Olivia Windle who has juvenile batten disease.
16-year-old Olivia Windle who has juvenile batten disease.
More than £3,000 has been raised for a teenager who has a rare genetic condition.

Olivia Windle, 16, of Killamarsh, has a life-limiting neurodegenerative condition called juvenile Batten disease, for which there is no known cure.

She was diagnosed at the age of seven and the once perfectly-healthy girl has lost her sight, suffers from seizures and is beginning to lose the ability to walk.

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A group of firefighters who will take part in a special fundraising event have smashed their initial £3,000 target and are now aiming for £5,000.

Olivia’s mum, Michelle, 41, said: “When we first heard about Batten’s disease I didn’t know what it was – our lives were turned upside down. Olivia was a normal seven-year-old playing with her friends and her dolls. Then she started saying she couldn’t see the lines on a page or her friends in the playground.”

The firefighters got involved after hearing about Olivia’s story through Michelle’s mum, who works at Sheffield’s Northern General Hospital.

They do a rally every year for a different charity. It will take place over 3,000 miles across five days.

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The money raised will go towards a new wheelchair, a walker, a rise and recline chair and a wet room.

Olivia, who lives in Killamarsh with mum Michelle, dad Russell, 42, and brothers Harrison, 13, and four-year-old Finley, loves to dance and is a big Harry Potter fan.

“There are times when I could just sit in a cupboard and cry but we try to take each day as it comes,” Michelle said.

“The people of Killamarsh have been amazing in supporting us as a family through both the good and the bad times.”

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On reaching their fundraising target, the group said: “All the money we raise will be used towards purchasing specialist equipment for Olivia to make her life that little bit better.”

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