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.
If we are successful in raising these funds in the early part of 2024 it means the work could be complete as early as April 2024. The builders are already on site completing initial work covered by the local council and we would want that to continue without having to take a long break.
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."
WHAT IT MEANS
This project means so much to us as a family. It will make a difference to every activity and the everyday routines of our lives. This project means we can carry out all of Aurora's personal care without straining and limiting the risk of injury and it will only require one of us to do it. It means we can attempt to toilet train Aurora as her new bathroom will have plenty of space for an accessible and safe toilet; all the privacy and dignity we could ever hope for. It means we have a space for all of her necessary equipment. It means she will be able to sleep in a bed that’s fit for purpose. It means when we tuck our children in at night, we won’t worry about Aurora’s chaotic sleep waking the whole household. It means we won’t struggle pushing her heavy wheelchair up and down the very bumpy gravel drive every day. It means we can continue our normal working patterns of working from home, despite losing our home office. It means we won’t think twice when we want to take Aurora out of the house and it won't require two people each time. Most importantly, it means we will have a sustainable, safe, accessible, practical and comfortable home for Aurora and our family now and into the future.
Thank you for reading our story and your consideration in giving towards these developments for Aurora and our family. This means a huge amount to us and we're grateful for your support and generosity towards us.
Aurora is our beautiful four-year-old daughter. She has the softest skin, best curls and the most infectious laugh. Most of the time we have no idea why she's laughing but it's hilarious to be around.
As our first child, we had no clue anything was amiss in Aurora's earliest weeks. She seemed content, until extended crying episodes began and we realised changing 15 dirty nappies a day was unusual. At 6 months old, a paediatric consultant suggested further investigation as Aurora's responses and physical movement were not typical and he suspected possible brain damage. Due to the covid-19 pandemic, we waited 10 agonising months for the MRI scan which didn't reveal any obvious cause for concern. Eventually Aurora had genetic testing and shortly after her second birthday was diagnosed with Pitt-Hopkins Syndrome - a rare genetic condition characterised by developmental delay, lack of speech, severe cognitive impairment with autism spectrum disorder, mobility and motor skills issues and gastrointestinal complications (to name only a few). On the one hand, we were relieved to have a diagnosis and on the other it was overwhelming - this condition was real, with no known cause or cure. The possibility of her catching up as we had hoped and so many had optimistically suggested was gone and the outlook was devastatingly sad.
Aurora can't speak or walk/crawl and her cognitive ability is limited. She requires assistance with every task and struggles especially with gastrointestinal pain and sleep. Aurora makes many involuntary movements with her whole body and so we've learned to be careful when carrying her. Routine is communication in our family and allows Aurora to feel safe, knowing what comes next at different times of the day. Music works like magic and will often soothe her when she's feeling frustrated or battling pain. We've often said, the worst sound in our world is Aurora in pain; but the best is her laughter. She loves time outside at the park or beach and times at home with her family. Aurora loves to watch other children playing or running and since having a younger brother for the last year is loving watching him kick a football around the house!
Whilst Aurora can't speak, she makes lots of vocalisations which let us know what mood she's in. She's easy going in nature but incredibly determined and shown such resilience when faced with all kinds of illnesses and set backs. Aurora is teaching us things we didn't even know we needed to learn. The value of eye contact; silence; smiles and gratitude. Life with Aurora is not straightforward and as she grows some of the physical and practical challenges grow too, but we look forward in faith believing the best is yet to come for her.
HOW MUCH DO WE NEED TO RAISE?
£66,000. This figure comes from the builders who have costed out the additional work beyond the DFG mandated work.
HOW LONG WILL THE PROJECT TAKE?
Overall the project would take around 3 months if all completed in one go. As the project is split into three separate parts of the house (bedroom/wet-room; porch and drive; office/garden), we are trying to tackle each area separately. This will give us a break from all the building work and allows us to manage the process better even if it takes a bit longer. Thankfully, our builders are happy to work in this way and are considerate of the unique dynamics of our family. Work has begun on the bedroom/wet-room making use of the DFG but we now need to raise enough funds to get the next parts underway.
HOW WILL THIS CHANGE OUR LIVES?
Once all the work is complete it will change our everyday lives. Aurora will be safely cared for around the house and that will have a huge impact on the rest of our family too. Currently, almost every task for Aurora requires two of us to carry and support her whether that's getting her in and out of the house, bathing her or moving her from one place to another. Even tasks like putting her shoes or coat on are impossible alone. These adaptations will mean we can do these tasks with much greater ease and won't always require two people to carry her over thresholds. Getting her outside is a vital part of her life and seems to improve her mood and sleep so we hope to be able to get into the garden more freely too as well as to the local park.
The extra spaces of the porch and garden office will provide more storage for her specialist equipment and allows us to continue working from home to be as flexibly available to provide all the care and support we need for Aurora.
27TH FEBRUARY 2024
We've seen over 30% of the funds raised so far which is amazing! Still a long way to go but we're getting there. Here are some of the latest updates.
BEDROOM AND WET ROOM ARE NEARLY COMPLETE
Aurora's bedroom and wet room and nearly complete. Her new scan mobility bed (with high protective sides and bed that raises) is in and ceiling host to help get her around the room without injuring ourselves is installed. The wet room is complete with safety flooring, shower and plenty of room for her to be safely manoeuvred in her chair. Blackout curtains and a new window for the wet room are still to be installed but once complete we hope Aurora can start using this room!
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.
4TH FEBRUARY 2024
Thank you so much to everyone for your incredible generosity! We're grateful to all who have given so far and to see over 20% of the target raised already. Work on the bedroom and wet-room has raced on and small parts of the garden patio are underway. With some of the money raised so far, we can get the builders pressing on with the next part of building the raised patio and fences in the garden and the level access door from the house onto it.
LOUNGE INTO BEDROOM
Work on Aurora's downstairs bedroom began with taking out the floors, knocking out the chimney and breaking through into the adjacent office. They took out the ceiling and boarded and plastered the room.
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.