As this month reaches an end, so too does the works for the latest completed adaptation project from Sullivan’s Heroes for ‘William and his great glass elevator’.
The previous concerns surrounding access to William’s house, which was up three steps making it difficult to manoeuvre William’s wheelchair, have now been overcome with the creation of William’s own entrance with level access for the 7-year-old.
William’s family give us some background to the project’s requirements:
“We live in an old house and as such we have multiple steps throughout the house, low ceilings and also a very narrow staircase. These challenges have become harder to manage as William has grown. We have struggled to get him up the stairs to his room and on multiple occasions he has been having a seizure when we have needed to move to somewhere safer to manage his seizures. The general moving him around the house in his chair has become increasingly difficult which limits how we act as a family, often with us being in different areas; this is especially frustrating at mealtimes where although William cannot feed orally we think it is critical he is part of this family time. Storage of his various items of equipment also poses a challenge; he has a standing frame, two chairs, two wheelchairs and various nebulisers, suction machine and matting. This as well as the safe storage of his medications and treatment apparatus also has been difficult, especially as this equipment grows with him.”
The works planned for William’s project involved installing specialist hoisting and a bathroom that allows for William to be kept clean – this is critical for his gastrostomy care and made all the more difficult as he is incontinent and vomits frequently with seizures. William has multiple seizures throughout the day and night requiring intervention with rescue medication, as such his parents need to be close to him to respond to his seizure monitor. It was imperative therefore that a lift to William’s new bedroom was installed which will allow his parents to be next to his room, if they are not already sleeping in his room, if he is having a particularly bad period of seizures.
William’s family explain the issues this posed:
“The major obstacle was getting William upstairs. We considered having a downstairs bedroom for him to save in cost but that would also mean moving us downstairs as we need to be very close to him as he often has seizures during the night. Installing a lift was not practical in the existing structure due to its age and timber construction. It was necessary to extend the building so we could add a lift to the new part of the building. By doing this we have also created space with a higher ceiling on both the first and ground floor for hoisting. Finally, we have found it increasingly difficult to wash William properly and easily, so we have added a wet room with a changing table and shower that will allow us to hoist him into the wet room and from there into his bed; this will make a huge difference to his day-to-day care and safety.”
The complexity of the building works required all came at a cost above the Disabled Facilities Grant awarded by the local authorities, and called for support from Sullivan’s Heroes, as William’s parents highlight:
“Sullivan’s Heroes were amazing from the outset. The scale of the project was very daunting from a financial and also practical perspective. Having a sounding board and multiple points of reference that it had been done by other families before allowed us greater confidence to proceed. We did engage the council but they are very restricted from a financial support point of view, the legislation in this area restricts grants to £30,000 which is a small sum for most adaptations and desperately needs updating with new funding. Sullivan’s Heroes was fundamental in how we could approach charitable organisations and signposted us to organisations that could help bridge the financial gap. Beyond this, providing advice and the mechanism through their charitable status allowed us to access financial support that would otherwise not be available to us.”
The £20,000 target required for the project was raised in a matter of months with the generous support of external organisations; including fundraising from a Quiz night organised by the local Rotary Club; together with support from family, friends and colleagues – including William’s Dad and Aunt who both bravely took on formidable personal Ultramarathon challenges to raise sponsorship funds.
Having been through this fundraising journey with Sullivan’s Heroes, William’s parents express their thoughts on how the charity helps families in similar situations:
“Sullivan’s Heroes offers considerate and well-informed advice in the approaches to fundraising and organisations that might be able to help. Without this empathetic and well informed support, I believe that many people would not feel able to even begin on what are critical projects due to the financial requirements of many of these projects, and moreover ever be able to meet the financial costs to completing them. It would be a great place where Sullivan’s Heroes did not have to help fill the financial gap left by the failings of the state to support the most in need people in society. This would allow a focus on the advice, support and best practice for home adaptations.”
Of their own personal fundraising journey William’s parents continue:
“Sullivan’s Heroes helped us understand the best approaches to fundraising and ideas of what had been successful in the past. They signposted us to organisations that could help with funding and how to approach them. Beyond this, how to put in place the practical requirements of fundraising pages to allow for donations was also fundamental to being able to achieve the fundraising needed for the project.”
“The registered charity status is really important as some organisations simply cannot donate directly to individuals irrespective of their sympathy for the cause and desire to help. Understanding this and how to articulate to potential supporters allowed us to approach and receive donations that simply would not have been possible without the registered status of Sullivan’s Heroes as a charity.”
We’re delighted at Sullivan’s Heroes to see this fantastic space completed for William and we conclude with these words from William’s family which sum up the project as a whole:
“The adaptations will allow us to have a much more inclusive family life, with William able to participate in all aspects of home life. The care needs for him will be much better met with the new hoisting and lift removing restrictions and barriers to care. This point is also critical in creating an environment that is safe for carers including us as family.”