The Objective
To finish renovations and garden improvements at the home of Stevie Tayor, who suffers with rare Batten disease, a condition that causes the nervous system to deteriorate and has already left her blind, with the potential to lead to seizures and childhood dementia.
The Background
Stevie Taylor, now 15, from Rotherham, was diagnosed with Batten disease at the age of eight, after teachers noticed she was struggling to see in class.
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, who turns 16 in October, 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.
The next stage is likely to see her suffer fits and her family feels this isn't too far away as Stevie has started to involuntarily shake / twitch. She and her sister are unaware of the outcome of her diagnosis, so her family are keen to ensure they can enjoy as much time together as possible.
Stevie’s father Paul, who was a gas fitter but has now shifted his work to write gas certificates so he can look after Stevie, and wife Karen, who is an NHS support worker with new mums, 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, leaving the family, including Stevie’s sister Jasmine, aged 9, with an unusable garden and a building site for a home.
Paul, who previously volunteered and worked on a DIY SOS project, appealed for help from the construction community and in late 2023 volunteer tradespeople rallied around to make the property in Wath upon Dearne more safe and accessible.
But work remains to be done, so Paul applied for help from Band of Builders so they can finally finish their home and ensure Stevie - who loves the outdoors - can enjoy her favourite place.
The project
Some improvements have been made to the garden at Stevie’s home, including a lift to take Stevie down to ground level and a block-paved walkway.
Work to finish the garden will include the installation of stairs to this walkway, as well as hoggin pathways, a seating area so Stevie can enjoy sitting in her favourite place as well as a raised area to futureproof it for Stevie when she needs a wheelchair, plus the potential creation of a wild gardened seating area.
The whole garden will be given a full tidy and makeover, with thick blackberry
bushes removed and all waste taken away.
When: The project will take place at the end of September
Where: West Melton, Rotherham
Trades Required: Landscaping, groundworks, fencing, decking, turfing, joinery, paving, bricklaying and general labour
Get Involved!
To register your interest, please complete the form by clicking HERE, alternatively for more information please email projects@bandofbuilders.org
You can also support the project by donating via our donation page or enthuse fundraising platform using the reference 'Stevie's project'.