Objective
Toby Fletcher’s father, Shaun, was working on a home extension and renovation –including adapting a downstairs space into a bedroom and wet room – so that the 15-year-old could have the facilities to support more round-the-clock palliative care amid a battle with quadriplegic cerebral palsy and dystonia.
Shaun, a father of six with two grandchildren, was planning to continue work on the family home during the Christmas period but tragically took his own life on Christmas Eve.
The family are grieving an unimaginable loss and are in desperate need for both the completion of Toby’s bedroom and wet room and the completion of the other rooms for his mum, Sarah, and his siblings.
Because Toby still doesn’t have dedicated facilities, his carers can only visit during the day because the interior of the house is still like a building site. So, Sarah has to carry Toby upstairs to bed and care for him alone during the night.
Background
Toby was born 13 weeks premature, which resulted in a lack of oxygen to his brain, causing cerebral palsy and dystonia. His condition affects his muscle control, leading to painful involuntary movements that make it difficult for him to gain weight. Toby is also deaf and is fed directly into his bowel (JEJ fed). To help manage his dystonia, he has a deep brain stimulator, with electrodes in his brain connected to a battery pack in his abdomen.
Toby requires 24/7 care, including numerous medications throughout the day and night. He is housebound and relies on stretcher transport for all appointments.
During weekdays, he receives some daytime care from continuing healthcare, but his needs are extensive.
Sarah has had to carry him up and down the stairs and hold him over the bath to wash him – both of which pose significant risks to them both. Sarah rarely gets a full night’s sleep due to the demands of caring for Toby.
Toby’s care is now considered palliative. While doctors haven’t provided a specific timescale, his condition makes him extremely vulnerable – something as simple as a common cold can make him very poorly.
The Project
Toby has needed a downstairs bedroom and wet room for a long time, but the house wasn’t big enough, so the family obtained some funding for materials through a Disabled Facilities Grant via the local council.
Toby’s dad, Shaun – an electrical engineer by trade but took his hand naturally to all building trades – had been carrying out the renovation himself while also working full-time as an electrician.
Toby is 16 years old this year, and a properly equipped bedroom and wet room with hoisting will transform his care and improve daily life for the entire family. This renovation will mean that mum Sarah can care for him safely and get the vital support she needs too.
Key Dates:
The project will start on Saturday 5th July 2025
Location: Foulden, Norfolk
Trades Required: plasterers, dry liners, decorators, bathroom fitters, carpenters. floorers, electricians and general trades.
To register your interest, via the link or email projects@bandofbuilders.org
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