Reuben and his family are delighted now that the jungle-themed ‘Room4Reuben’ is completed and in everyday use for the 6-year-old.
Reuben and his family have not only created this fantastic bedroom with en-suite level access shower room, but Reuben now also has access direct from his bedroom to the garden – which has been made safe and suitable for him, given his physical and learning disabilities.
The living space has also been extended to provide sufficient space for Reuben to move freely around, and to accommodate his specialist supportive chair for eating and his Kaye Walker.
Reuben’s parents detail just some of the difficulties the previous layout of the home posed for Reuben:
“Reuben did not have his own bedroom and often slept in different rooms trialling what suited him best – but none of the existing bedrooms were accessible or suitable for him and sharing with his siblings was problematic. We had no accessible bathroom, making meeting Reuben’s hygiene needs difficult as he was getting bigger."
“If a downstairs room was made into a bedroom for Reuben there would have been a real lack of family living space, with insufficient space for his specialist chair. The garden was inaccessible and unsafe for Reuben to access.”
Having been awarded £50,000 towards the project from the Council’s Disabled Facilities Grant funding, there still remained an initial shortfall of £25,000 – for which the family set about fundraising with the support of Sullivan’s Heroes, as Reuben’s mother explains further:
“I struggled with the idea of asking for so much money – with the backing of Sullivan’s Heroes – a legitimate charity – I felt that my asking was legitimised – especially because there was always an option for funders to pay the grant to Sullivan’s Heroes who held the funds for us. This assured funders that funds would be used legitimately which in turn validated my requests for funds. Without Sullivan’s Heroes’ advice I would never have known of all the charities I could apply to.”
Over the course of the (pre-Covid!) summer months Reuben’s friends, family and colleagues carried out events and activities including sponsored runs, swims and jumps; Car Boot sales and Cocktail parties!
Local and national organisations granted funds – to not only meet the initial target but to also cover changes to building plans which had to alter, incurring additional costs along the way. The amazing £36,000 that has been raised has met all these revised costs for Reuben’s new space – creating a jungle haven for Reuben and a space all the family can safely use.
Reuben’s family elaborate on the benefits the project has brought about:
“The extension created additional living space for the family and space to accommodate Reuben’s specialist chair. Reuben now has a downstairs bedroom to call his own that he is able to access independently, it has direct access to the garden, where Reuben can access a safe garden to play. Reuben’s wetroom enables us to have enough space now and as he grows to shower him, change nappies etc and in time hopefully to help him learn toileting and self care.”
When asked of the difference the project has made, Reuben’s family continue:
“A huge difference! The family is now able to separate out into different spaces when Reuben’s needs or behaviour dominate the room, e.g. to do homework, watch TV, talk.
"Reuben can sleep in his own room and he can be supported with night-time wakings without disturbing his siblings.
“There is space for Reuben to move around, there is room for a dining table with enough space for his specialist chair enabling him to eat with the family. He is able to access the garden independently reducing the demands on us, his parents. We can comfortably change his nappies and wash/shower him in a space that is big enough which reduces lifting and handling. The increase in space and creation of accessible spaces has reduced stress levels significantly.”
Reuben’s family give an insight into the fundraising journey itself and the support given by the charity:
“At times it felt insurmountable, and Fiona encouraged me on! After many funding applications and I felt I had exhausted them all Fiona always came up with one more possibility!"
“We gained an enormous amount from Sullivan’s Heroes’ support! Information about funders, advice about businesses to approach for support, letter templates, a conduit for funders to provide grants to families – essential for funders who don’t award grants directly to families, and validates and legitimises funding applications – suggestions for fundraising activities, a financial grant; emotional support and encouragement when the task seemed insurmountable or the shame of asking set in!"
We’re delighted at Sullivan’s Heroes to see the amazing space that has been created for Reuben, and send our thanks to everyone involved along the journey. We end with some final thoughts from Reuben’s family:
“Sullivan’s Heroes provides a life-line! Raising and caring for a disabled child is extremely challenging – to not have enough accessible space to care for your child and to enable your child to play, learn, grow and thrive is a real worry, adapting your house accordingly makes the challenge bigger – and then not being able to financially resource this – it becomes impossible! Sullivans Heroes truly makes this possible!"
"Their proven track record of making this become a reality for so many families gives you hope from the outset, and the support they give every step of the way provides validation and support and reduces the isolation in what is a very challenging task. Thank you Sullivan’s Heroes!”