Aurelia is a truly amazing little girl. She was born in 2018 with an incredibly rare genetic condition, VPS4A related neurodevelopmental disorder, which affects just a handful people worldwide. She is registered blind, severely physically disabled (she can’t sit unaided, crawl, stand or walk and has very limited fine motor skills), is tube fed and is non-verbal. In spite of all of this she is such a happy, sociable little girl, she has the most beautiful smile, a ridiculously infectious laugh and a crazy thrill-seeking nature.

Aurelia has been through so much in her life, with multiple surgeries and hospital visits, and continues to face new challenges every day. But, through her sheer determination and hard work, she is making real progress and living life to the full.

We have had amazing support from a whole raft of NHS doctors, nurses, specialists and therapists but sadly ongoing funding shortages mean that statutory services simply can’t provide Aurelia with everything she needs. We are therefore fundraising to provide Aurelia with access to regular physiotherapy, hydrotherapy, occupational therapy and speech and language therapy, to support her development. £3,000 per year is needed for this therapy.

We are also fundraising to provide Aurelia with the specialist equipment she needs, both for everyday life, but also to enable her to go on adventures with her brother, such as an all-terrain wheelchair and a bike trailer. In due course we will open another campaign to continue to adapt our home to meet Aurelia’s needs as she grows, providing her with safe spaces to play and enabling her to access our garden so she can use her hot tub for hydrotherapy and bounce on the trampoline with her brother.

Thank you for following Aurelia’s Adventures and for any donation, large or small, you are able to make. Your support really does mean the world to Aurelia and to us as a family.

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