Aurora is our beautiful four-year-old daughter. She was born with Pitt-Hopkins Syndrome - a rare genetic condition with no known cause or cure. Aurora can't speak or walk and her cognitive ability is limited. She requires assistance with every task and struggles especially with gastrointestinal pain and sleep.
Aurora’s Big Build is to fully adapt our home into a place where Aurora can safely live and remain in our care for all of her life. Aurora requires help with every task from moving to dressing to bathing and this is often accompanied by lots of involuntary movement which is increasingly dangerous when carrying her. Now more than ever, we feel the physical weight of carrying her up and down the stairs and in and out of our house. This adaptation work will provide protection, care and dignity for Aurora and ensure we as her parents don't injure ourselves in the process.
We’ve worked hard to provide all that Aurora needs. All the aspects of Aurora’s Big Build are developments to the home that we hadn't intended to make and therefore, had not financially prepared for when starting a family. She is growing fast and we feel both a physical and mental demand to raise the funds quickly. Without the means of extra support, Aurora’s Big Build will not be possible.
The build will concentrate on developing three separate parts of the home: a downstairs bedroom/wet-room; a new porch and accessible driveway; and the garden. We are so grateful to have had the Disabled Facilities Grant (DFG) to help with some of these adaptations but they do not cover a large amount of what's needed to create the functional space for Aurora and our family. We have a Just Giving page where friends and family are donating and several in our community are considering ways in which they can raise awareness and support alongside us but this certainly won't raise all we need.
The downstairs lounge is to be turned into Aurora's bedroom, meaning we wouldn't have to carry her up and down the stairs. Whilst there wasn't space to install a lift to the upstairs bathroom we are able to turn the room next door to the lounge (which we have been using as a home office) into an accessible wet-room. We will have a hoist installed so Aurora can move from her bed to whatever chair she may be required to be in. We hope to create level access out at the back of the house into the small garden by creating a raised patio, so Aurora can get outside in her wheelchair. She loves being outdoors so this will be a great benefit for her. Our hope is to replace the fences for better privacy. Similarly at the front, we hope to have a resurfaced driveway for better access and to create a more spacious porch area to store all of Aurora's specialist equipment (up until now we could store this in the rooms that will become her bedroom/wet-room).
Aurora's OT explains the importance of the additional works: "The major adaptations are currently underway; however, the DFG will not cover additional work to the home that is required for the family. This includes replacing the entire driveway with resin to ensure longevity and easier use of pushing specialist equipment as opposed to having just half the driveway replaced with paving. The family would also benefit from having their front porch elongated to allow enough space to store Aurora’s equipment. As a result of the downstairs office being converted into Aurora’s level access bathroom, the family have lost a principal room used for working. The family would benefit from having an office outside in the garden to enable the family to continue to work from home."
GARDEN WORK
The shrubs and old steps in the garden have been removed and a brick wall built for the new patio area that leads out of the house. This will eventually have a zero-threshold door to allow level access for Aurora's wheelchair. Fence building in the garden has progressed with higher fences required with the raised patio area so that we're not overlooking the neighbour's garden. Foundations for the office/shed have been dug too and concrete poured. We have only been able to finish the bedroom/wet room and this part of the garden because of your generosity. Now that the fence is secure, we are pausing the work and hoping to turn our attention to the much needed porch development once more funds are raised.
OFFICE INTO WET-ROOM
The builders began to fit the pipework for the wet-room and then discovered the concrete floor had to be removed and then new concrete poured and the floor levelled. The pocket door was installed between the rooms and the wet-room has been tiled ready for the final fixings.
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.
Registered Charity Number 1163021.
Sanjay Rajo