"Always positive" Stevie drives dad's fundraising feat

A DAD inspired by his “always positive” daughter is taking on an adventurous fundraising feat to raise awareness of the rare, life-limiting disease she lives with.

Father of two Paul Taylor and 12 other friends and family members are cycling 17km through Snowdonia Park, before climbing Mount Snowdon and kayaking 5km in October in aid of daughter Stevie, who has Batten disease.

Batten disease is neurodegenerative condition and Stevie, now aged 12, was diagnosed aged eight after she began to lose her eyesight.

Paul said: “Stevie is doing okay – her eyesight has deteriorated more, and her speech is becoming more garbled but she’s still smiling and always positive and that’s what drives me on.”

Sponsored by Energise Energy solutions, Paul and his team are aiming to raise £5,000 to split between the Batten Disease Family Association and to pay for the 24-hour care that Stevie will need.

Paul and wife Karen are also in the process of refurbishing a bungalow in West Melton where they can offer better care for Stevie.

Meeting Ant and Dec, visiting Disneyland and having a sing-along with Eurovision star Sam Ryder are a few of the things her family are hoping to tick off her bucket list with the money raised.

“She wanted to visit Barcelona, so we have arranged this as a surprise for her birthday this year.” said Paul (46).

“On hearing her diagnosis we took Stevie to Lapland and to swim with dolphins.

“She loves horses, so she now attends riding for the disabled in Barnsley fortnightly.”

Stevie is no stranger to fundraising herself - she previously donated her hair to the Princess Trust and helps pick litter in the local community.

Wath Academy student Stevie also became a chart-topper after playing her part in a number one record.

She and a group of youngsters with Batten Disease backed musician David McGovern on his cover of New Kids On The Block's 'This One’s For The Children.'

The Christmas charity single was released in aid of the Batten Disease Family Association and became the last physical number one of 2022.

To donate to Paul's appeal visit www.tinyurl.com/JustGivingStevie.

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