We are raising funds to help develop our house into a safe and longterm space for Aurora, who was born with a rare genetic condition called Pitt-Hopkins Syndrome (PTHS). Aurora's name means 'dawn' - she is a light that keeps on rising - and we look forward to the day where that light shines brighter than we could ever imagine.

MEET AURORA

WATCH: https://www.youtube.com/watch?v=ZU-paFAhzXo

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.

THE PROJECT

A SAFE SPACE FOR LIFE

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.

All the aspects of Aurora’s Big Build are developments to the home that we hadn't intended to make 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

The build will concentrate on developing three separate parts of the home: a downstairs bedroom/wet-room; a new porch and accessible driveway; and an accessible 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. 

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.