It’s been a bustling few weeks at Sullivan’s Heroes, with a flurry of new applications being welcomed by the charity — four of which we’re delighted to introduce to you here.
The ‘Benny Project’ will reconfigure and extend the ground floor of the family home, creating space downstairs for a wet room and accessible living and bedroom space for Benny. While the council has provided funding, there remains a shortfall of £26,973 to complete the works. Construction is already underway, with Benny’s family fundraising to cover the remaining costs.
Benny’s mum tells us: “Benny has a rare condition called Hutchinson-Gilford Progeria Syndrome or HGPS, which causes children to age much faster than normal – with a shortened life expectancy of around 13 as unfortunately there is no cure as yet for this. As far as we know he is only 1 of 2 people in the whole of the UK with the condition.”
“Due to the rare condition he has and due to his size he needs things adjusting – chairs, toilet, sink, shower; hence the wet room requirement. Due to having no subcutaneous fat he needs padded cushions and specialist seating. The adaptations will be life changing for Benny.”
Meanwhile, ‘Funding Luke's bedroom, shower and de-escalation space adaption’ project will add a two-storey extension to the family home, creating a ground-floor de-escalation space, a bedroom on the same floor as his parents for safety, plus a level-access shower. A total of £57,000 is needed to cover the full project costs above the council funding awarded.
Luke’s parents tell us: “Luke is 17 and has complex care needs. He is autistic, non-verbal, has epilepsy and significant learning disabilities. He requires constant supervision and support, day and night. Despite this, Luke is mostly settled at home, and as a family we are committed to keeping him with us for as long as possible.”
“Our current home is a small 2½-bedroom house and is no longer suitable for Luke’s needs. Moving house is not a practicable option due to the nature and intensity of his care, the adaptations required, and the stability he needs. These adaptations are about providing the right environment for Luke to remain at home with us, his family, and to reduce the risk of him needing hospital or institutional care.”
Over at Penny’s home, the fundraising for ‘Penny’s bedroom padding and window’ has got off to a flying start – with over 10% of their target already raised in their first week.
The project will extend and restructure the family home to provide level access, a padded bedroom and wetroom with changing bed for Penny, plus safety adaptations to the windows in Penny’s bedroom and the lounge to prevent climbing and serious injury. The council funding awarded towards the works leave a shortfall of £20,500 to meet the project costs.
As Penny’s Mum tells us: “Penny has a very rare genetic condition relating to the TBL1XR1 gene. As a result, she is severely learning disabled and non-verbal. She also has sleep difficulties, reflux, an autism diagnosis and may have a bicuspid heart valve.”
“Penny has no sense of danger and does not understand the consequences of some of her behaviours, which puts her at constant risk of injury. As parents, all we want is for our daughter to be safe in her own home.”
Whilst for 7-year-old Abdul, ‘Funding Abdul's Bedroom and washroom’ will convert the loft of the family home, to create a bedroom and level access wet room for him, once the shortfall of £3,500 above the council funding awarded has been raised to meet the required costs.
Abdul’s parents advise: “Abdul is a non-verbal autistic child who requires ongoing care. At present, he shares a bedroom with his four siblings. Because of sleep difficulties and stimming, Abdul would benefit from having his own room. His delayed cognitive development means he still wears nappies at seven years old and needs frequent washing during the night.”
“These planned adaptations will give Abdul access to a private bedroom and necessary washing facilities. This would be a dream come true, not only for us, but Abdul often will not tolerate anyone around his space. Hence having his own room would help us regulate his sensory needs.”
Several other supported projects have now begun their construction – one of these being 'Tay’s Adapted Wetroom'. With assistance from Independence at Home, funding was secured to cover the £5,975 shortfall needed to build an extension to the family home, providing the level-access showering facilities required to meet Tay’s needs.
Tay’s mum tells us: “Tay has many disabilities and severe behavioural issues as well as seizures and Severe Intellectual Disability. Whilst Tay is non-verbal and therefore cannot communicate his needs, his desire to live a fulfilled life and his achievements are outstanding. This wetroom will help with promoting his independence, learning skills and less falls from his current bathroom and generally being a safer environment for him.”
Works for ‘An accessible home for Finlay’ are also well underway – extending the family home to create a bedroom and wet room that can be accessed independently by Finlay, together with a kitchen adapted for a wheelchair user, plus access created through the ground floor and to the garden with a permanent ramp.
Works to date include the rear extension being built on Finlay’s home, to accommodate the open plan living, dining and kitchen areas. The front door has been moved, and the ground floor has been levelled throughout, to allow easier access for Finlay. Meanwhile, the wetroom for the teenager has begun construction on the side of the house.
Finlay’s Mum tells us: “Finlay has never lived in a fully adapted house and that makes me sad. He deserves to have access to all of the things that we take for granted. He can't move around freely, he needs support to access the bathroom, he has no privacy, our family space is cramped and our home is disabling."
“The adaptions will provide a home for Finlay that meets his physical and visual needs. Finlay will have a downstairs wet room that he can access without support. We will have open plan living space, allowing him to move around freely and a space where we can spend time together as a family. Finlay strives to be as independent as he can be, and the adaptions will enable him to become more independent at home.”
‘Margot's Big Build’ continues to make great progress, with work almost completed on creating a downstairs bedroom and a fully accessible kitchen tailored to meet Margot’s needs.
Margot’s mum recently shared this heartfelt video and message, which highlight the urgency of implementing home adaptations such as these, to make daily life safer, more comfortable, and more accessible for the children we support:
“This is Margot. Every night, she has to crawl up the stairs just to reach her own bed. It’s painful, it’s dangerous, and it’s something no child should ever have to do. We’re working with Sullivans Heroes to try to build her a safe ground-floor bedroom — a space where she can finally rest without having to struggle.”
Now the works are near completion, Margot was eager to test out the recently installed flooring in her new bedroom, for which funding was kindly received from Florence Nightingale Aid in Sickness Trust.
The adaptations for ‘Noah's independence and dignity’ were also fortunate recipients of funding towards their flooring cost from the same benevolent organisation; together with support from a charity in their local area.
Two more projects also received generous funding recently, with ‘Alex’s fight for independence’ receiving a grant from Grocery Aid; while ‘Time for Thomas Wet room and Bedroom’ benefitted from fundraising carried out by the team at Hays Travel.
Please do get in touch if you have any fundraising events, activities and ideas you’d like to share with us; or if you would like to apply for a grant or to fundraise through Sullivan’s Heroes.
Thank you for your ongoing support, it is greatly appreciated.
