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Summer creations and celebrations

The summer months have brought about many of the projects being supported by Sullivan’s Heroes getting underway, making the most of the (sometimes!) dry weather.

Ahmed’s Big Build’ has recently started the building works to create a ground floor bedroom, wheelchair accessible bathroom and provide additional living space to meet 12-year-old Ahmed’s needs as he gets older. The family continues to fundraise for the final elements of funds required towards the £30,000 target to meet the full project costs.

Meanwhile, ‘Leon’s downstairs bedroom and wet room’ is well underway now that the £15,000 funds required have been raised, to extend and restructure the existing family home to provide 7-year-old Leon with a downstairs wet room and bedroom .

There have been many new applicants to the charity over the summer months, including welcoming our 150th child being supported by Sullivan’s Heroes

That’s 150 life-changing adaptation projects to be put in place or already completed thanks to your support … making 150 children happier, healthier, safer and more independent in their own home.

Two of these recent applicants are Musa and David, who’s families have been busy on the fundraising front over the past months.

Funding For Musa’s New Room with Adaptations’ will build a ground floor bedroom extension with level access shower and ceiling track hoists, with space for a specialised hospital bed to meet Musa’s needs; plus safe wheelchair access via a ramp into Musa’s home. The costs of the works leave a shortfall of £10,000 to meet the project costs above the Disabled Facilities Grant funding accessed through the council.

As Musa’s parents tell us:

“Musa is a brave and resilient six-year-old boy who has captured our hearts with his unwavering strength. Musa's journey has been marked by significant challenges. He is immobile and confined to a wheelchair, with limited control over his head and neck. Over the years, his ability to use his arms and legs has declined, and he now faces the additional burden of progressive scoliosis, a curvature of his spine; and now requires oxygen support during sleep and naps, further highlighting the severity of his condition. Managing his seizures has become an ongoing challenge, demanding constant monitoring and medication adjustments. The daily care Musa requires is both physically and emotionally demanding. Simple tasks like bathing and changing his diapers must be performed in bed and require the assistance of two people. Currently, a temporary ramp severely limits his mobility and independence, preventing him from experiencing the joys of outdoor activities. Our goal is to build a specially designed room on the ground floor with direct accessibility via a ramp. This dedicated space will feature a fully equipped wet room, allowing Musa to enjoy proper showers and personal care with ease and dignity; an inbuilt hoist system within the room for seamless and comfortable transfers for changing, bathing, and moving him between equipment; plus a specialised hospital bed, ensuring Musa can sleep soundly and minimise the risk of developing painful bedsores."

An accessible home for David’ will see the family home extended and the garage converted to build a new bedroom for David and create accessible living space, including a through-floor lift, giving David access to his bedroom. A Disabled Facilities Grant is being accessed through the council, but costs of the works leave a predicted shortfall of £50,000 to meet the project costs.

As David’s parents tell us:

“David is a miracle – he has faced so many difficulties and challenges in his short life. He is an integral part of our family and he teaches us so much about love; what it means to love and to be loved. David has quadriplegic cerebral palsy, bilateral hearing loss, cerebral visual impairment, severe dystonia, epilepsy, a complex gut and hip displacement. He is non verbal, non mobile and relies on bulky equipment to help with postural care and positioning as well as medical equipment to help keep him in the best health possible. At almost 5 years old, David still sleeps in our bedroom. We need to get to him quickly throughout the night when he needs help. He has an unsafe swallow and relies on a suction machine to keep his airways clear and minimise the risk of aspiration. We need to make significant changes to our family home so that it is inclusive and accessible for David, creating an upstairs bedroom, bathroom, garage conversion, downstairs changing space, through the floor lift and concrete ramp access. We will create an accessible changing space from our downstairs toilet – what a difference from currently changing him on a sofa! He'll have the dignity and privacy that everyone deserves.”

David’s fundraising has gone phenomenally well, with the target being raised in just a matter of weeks, thanks to the efforts and huge support of his family, friends and the local community, including organisations such as Dollar Parish Church.

Support has also been received recently for ‘Myk’s accessible home project’ – which requires £15,000 above the Disabled Facilities Grant funding awarded – to create a ground floor bedroom and bathroom including a specialist bath for Myk, together with wheelchair access into and around the ground floor of his home. Both Teaching Staff Trust and Hospital Saturday Fund have kindly donated grants towards the project for the soon to be 8-year-old.

We are also very grateful for support from Promise Dreams for four of the projects we are supporting – namely ‘Myk’s accessible home project’, Clodagh’s ‘Building works’, ‘Oliver’s forever home’ and ‘Leon’s downstairs bedroom and wet room’ projects, which also benefitted from support from Worthing Lions Club recently.

We sign off by unveiling the latest completed project from Sullivan’s Heroes – which created a beautiful bespoke room to meet Sam’s therapy needs.

Sam’s family advise:

“Sam is 17 Years old – he has autism and epilepsy. Last year we applied for DFG funding for a therapy room/safe space for Sam to allow him as he gets older to have his own space away from the house to enjoy his music, therapy, pottery and arts/crafts with his PA’s.”

Sam’s family tells us of the completed adaptations:

“The Therapy room gives Sam a safe space away from the house to enable him to regulate his sensory needs. The adaption has given Sam a safe space to chill out and play music away from the house, with his favourite toys and puzzles, and to do his pottery, arts and craft with his PA. Work has only just finished recently and already it has been well used and loved by Sam.”

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.