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.