Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.
We need to make significant changes to our family home so that it is inclusive and accessible for David. This includes creating an upstairs bedroom, bathroom, garage conversion, downstairs changing space, through the floor lift and concrete ramp access. It requires substantial reconfiguration of our property. As you can imagine, this will be costly.
David is a miracle - he has faced so many difficulties and challenges in his short life. He is an integral part of our family (Mum - Heather, Dad - Colin, big brother - Nathan and twin sister - Grace). He teaches us so much about love; what it means to love and to be loved.
David and Grace were born at 24 weeks gestation in September 2018. David sustained a brain injury at birth, which has resulted in profound disabilities. He 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. We communicate with David by using Canaan Barrie on body signs.
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. When he coughs, struggles with reflux or vomits, we need to be quick to act. David doesn't have paid carers, and we are routinely up and down several times during the night to care for him and ensure he is safe.
We were initially told that we would need to create a bedroom downstairs for David but this simply would not fit his needs (or ours). He needs to be upstairs, where the rest of his family sleeps. We created bespoke plans to design an inclusive and accessible family home for David's future, allowing him space to grow (as well as space for growing equipment that he needs).
We hope to build a bedroom and ensuite bathroom (with a height adjustable bath) for David above our garage. In order to maximise the space for David upstairs, we are slightly extending directly underneath. We are converting our garage to create some more living space and also to fit a through-the-floor lift, giving David access to his bedroom.
Currently, David spends a lot of time in his suppine standing frame. It's too wide to move through the doorway, resulting in David often being confined to our kitchen space. As part of the adaptation plans, doors will be widened to allow David access to all areas of his home, which is so important to us as a family. 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. We need to move his sister, Grace's, bedroom forward to extend the hallway, giving access to David's bedroom. We will also create a door from our bedroom directly into David's new bedroom for quick access, especially during the night. A concrete ramp will ensure wheelchair access to our front door.
As David's parents, we both work and juggle caring commitments. We have saved incredibly hard to allow us to make changes to our family home. Covid and Brexit have significantly impacted the expected costs. Initially we were told that the work could have been covered for £80,000. However, we have since been quoted £135,000. We had hoped to add any additional costs to our mortgage, but, with mortgage rates also increasing, this is no longer feasible. We now find ourselves relying on fundraising to help us bridge the deficit.
Plans were drawn up when David was 2 years old. He's now almost 5 and we are feeling the strain on our bodies from carrying him around the house, especially up and down stairs. Our planning permission expires in November 2023 and we are really feeling the pressure to begin the work before then.
Any additional funds raised will help with floor coverings, tiles for wetroom and internal cupboard doors, which have not been included in costings.
Can you help us to create these much needed changes to David's family home?