Volunteer Tradespeople Complete Project for Teenager with Rare Incurable Disease

A TEENAGER from Rotherham with an incurable disease has spoken of her joy at setting foot in the garden of her home for the first time ever after volunteers from national construction charity Band of Builders turned what was an overgrown jungle into a safe sensory space.

Stevie Taylor was joined by the rest of her family in thanking the volunteers who answered a cry for help from her dad, Paul.

The 15-year-old – who turns 16 at the end of the month – was diagnosed with Batten disease at the age of eight. The life-limiting degenerative condition, which affects fewer than 200 children and young people in the UK, causes the nervous system to deteriorate and can lead to seizures, blindness and childhood dementia.

Stevie has already succumbed to blindness and her condition is noticeably deteriorating, with her memory and speech affected. She is also now finding it difficult to swallow.

In a bid to give Stevie the best quality of life, the family sold everything, including their home, and remortgaged to buy a bungalow adapted for her deteriorating health.

Paul started trying to create a home to meet his daughter’s long-term needs, but costs quickly spiralled as they uncovered unforeseen work that completely swallowed up their budget. The garden had been a no-go area since the family moved to the house in Melton Green two years ago because it was both wildly overgrown and full of old building materials from when the roof of the house was replaced.

Paul, a former gas fitter – who has shifted his work to write gas certificates so he can look after Stevie – had previously volunteered and worked on a DIY SOS project and appealed for help from the construction community. In late 2023, volunteer tradespeople rallied around to make the property safer and accessible.

See the garden before work began:

Garden Transformation

The reformed garden is the 47th project completed by Band of Builders and has been designed in two main sections: the top half has new blocked paving walkways and an area where the family can install dining furniture, while the lower garden is a safe woodland space with even and compacted ground so Stevie can experience lots of different sensations, including a pond.

Along with her dad Paul, mum Karen and younger sister Jasmine, Stevie said thank you to the half dozen volunteers as she explored the garden for the first time – which features block paving walkways and raised borders so she can navigate the garden using her cane.

Karen Taylor said: “This garden gives Stevie greater independence because she isn’t trapped indoors. She can now get out and fully explore all the features of the garden, including the raised flower and planted beds.

“We are just so grateful to the guys from Band of Builders who volunteered their time and have worked tirelessly to transform a space that will change all of our lives.”

Tony Steel, Operations Director at Band of Builders, commented: “It’s amazing that the construction community had already rallied around Stevie’s family to get them to where they were, and it was a real privilege for us at Band of Builders to be able to help finish the project and give Stevie an early birthday present so that she and her sister can have a safe place to enjoy the garden.”

>> Read about more Band of Builder projects in the news