Another week … and another beautiful adaptation project completed through Sullivan’s Heroes – with ‘Ruby’s Big Build’ creating a fantastic new space for 8-year-old Ruby.
The project to extend the family home and convert the garage to create a downstairs bedroom and wet room for Ruby, plus make the garden accessible to her, required an initial target of £35,000 to be raised above the Disabled Facilities Grant and discretionary funding awarded by the local authority.
Ruby’s Mum gives us an insight into the challenges the family were facing with their existing house layout:
“Before having the house adaptations, Ruby needed to be carried up two flights of stairs to access her bedroom which was becoming very unsafe as she became older and heavier. Our bathroom was also on the same floor and didn't have the right equipment in it, so again was very unsafe for her to use and she was at risk of injury. It felt very undignified for her and she was often frustrated that she couldn't access these areas independently.”
“The ground floor area that we had before didn't have the space to store all of her equipment that Ruby needed throughout the day. Essential items were stored in places which were difficult to access quickly and this meant delays in Ruby receiving the care that she needed.”
Undeterred by the enormity of the task ahead, the family carried out a number of enterprising fundraising ventures – including Ruby’s older sister Ava undertaking a gruelling 100-mile bike ride and being featured on the local BBC News!
Multiple organisations also supported the project – with local charity The Winifred Eileen Kemp Trust donating a generous £8,000 – alongside numerous other funders including Hospitality Action, in association with The Black & White Foundation; Howdens and Independence at Home, amongst other kind supporters.
Ruby’s Mum explains the backing which Sullivan’s Heroes brought to the fundraising journey:
“Sullivan’s Heroes provided a recognised platform to fundraise from which was crucial. They also signposted us to organisations who they had worked with previously and were aware that they often had capacity to work with families like ours. Due to the positive relationships that Sullivan’s Heroes had made with these charitable organisations, applications were often a smoother process as they were familiar with the situation that we were in.”
“By providing a recognised platform to fundraise, other organisations were then willing to support us as they could see we were genuine. Fiona at Sullivan’s Heroes was incredible in offering practical guidance in applying for sources of funding. She had a wealth of knowledge and was so supportive throughout the process.”
Once the funding was in place, work could get underway on the project – with Ruby happily offering a helping hand along the way – despite elements being demolished around her!
Together with building a new bedroom and wetroom for Ruby, access to this was created by reconfiguring the kitchen, and adding a much-needed utility space.
As Ruby’s family tell us of the new spaces:
“We now have an extended ground floor space which includes a fully accessible bedroom, wet room and utility space.”
“We have purpose-built storage areas for all of Ruby's equipment and daily medical consumables, which means that they can be accessed quickly when needed.”
It wasn’t just the house itself that posed difficulties previously for the family, as Ruby’s Mum continues:
“Ruby was unable to access the garden safely and often became upset that she couldn't join her siblings who could play outside.”
Part of the adaptations works therefore involved making the garden area accessible and safe for Ruby by replacing the existing patio doors, with a level access threshold, and making the outside space level and wheelchair accessible for Ruby to use the garden independently as she grows older. This has brought about major differences for Ruby as her parents describe:
“The outdoor area is now fully accessible for Ruby to use, meaning that she can spend time in the garden with her family.”
“Ruby is enjoying using the outdoor space again – she can access her hydropool safely which has been great for her muscles and generally helps her with the pain she experiences. She is able to spend more time with her siblings, without feeling left out.”
The project all came together for a beautifully completed space for Ruby – though it wasn’t always plain sailing, as Ruby’s Mum elaborates:
“As I’m sure happens with most builds, ours didn’t go to plan and there were lots of hurdles along the way which Fiona supported us with. Our initial projected cost was of course far lower than what it ended up being – Fiona supported us to find additional funding whenever it was needed. I would often email or call Fiona in a panic as something unexpected had arisen and she was so supportive and spent the time trying to help us find a way through it.”
The differences that the building works has brought to all their lives are evident in the family’s thoughts on how things have changed since completion of the project:
“Ruby is now so much happier – being able to access her bedroom and bathroom easily has reduced a lot of her frustration and has given her a much greater sense of independence."
“For us to be able to access everything she needs quickly has also reduced a lot of Ruby's frustration as she is not having to wait either in pain or discomfort.”
“From the family's perspective it has taken some of the biggest sources of stress away – while Ruby's needs will always be challenging, having the right environment to care for her in makes it so much safer.”
“We have recently added some additional care staff to help us care for Ruby at home – this wouldn't have been possible previously due to how unsafe the environment was.”
Ruby’s parents conclude by reflecting on how Sullivan’s Heroes helps in sourcing the funding for such adaptation projects:
“Sullivan's Heroes is so unique in what it offers families who are often very isolated in their journey. We initially expected that the DFG would cover everything that Ruby needed, but it quickly became clear that the pot would not stretch that far – often families are forced into making really difficult decisions that impact on the whole family. With the cost of living rising year on year, the overall expense of accessible building works is rising, however unfortunately the DFG grant has not risen proportionately.”
“Just a huge thank you to Sullivan's Heroes – we wouldn't have been able to do any of it without your support. Fiona was there for us every step of the way and had a wealth of knowledge which enabled us to fundraise for everything that we needed.”
“Sullivan's Heroes is truly a remarkable charity and offers families a real chance to improve the quality of life for their disabled child."