Introduction to Aurelia and the FPWR UK
When my wife Alison was in hospital with acute preeclampsia with our first daughter in 2019, she met Clare, another expectant Mum-to-be in the Maternity Assessment Unit. They've become close friends since and our daughter Ava-Mae (pictured left above) and Clare's daughter Aurelia (pictured right) have become best buddies.
Late in 2023, Aurelia was diagnosed with Prader-Willi Syndrome (PWS).
In support of Aurelia, I have made the decision to donate 10% of every fee received in 2024 to the charity that Aurelia's parents are now supporting, the Foundation for Prader-Willi Research UK (FPWR UK).
Aurelia's story...
In the words of Clare, Aurelia's Mum...
"Prader-Willi Syndrome is a very rare genetic condition which affects approximately 1 in every 10,000-30,000 babies born, and it is a life changing diagnosis, caused by defects to Chromosome 15. It happens purely by accident. In Aurelia's case, she has maternal disomy, which means she has 2 chromosome 15s, both from me instead of 1 from me and 1 from my husband. This genetic defect was already present in the egg, even before conception. There are thought to be only 2000 people in the UK with this condition.
It is an extremely challenging condition which affects every little part of Aurelia's body. Diminished muscle tone & mobility issues (Hypotonia) Hyperphagia (the feeling of constantly being hungry and desperate for food, which increases with age, resulting in food seeking) Weight challenges due to the Hyperphagia, Intellectual disability, Learning difficulties, Behavioural challenges, Obsessive and/or compulsive behaviours, Stubborn & oppositional behaviour, Poor social & emotional skills/development, Emotional dysregulation, Difficulties adapting to change, Perseveration (repeating the same question over and over) Increased Anxiety and distress, and not being able to have her own children due to undeveloped sexual organs. PWS sufferers need lifelong support to achieve as much independence as possible.
The only way to find treatments and a cure, is through medical research...and this is the reason for our fundraising. The medical world has taken great leaps forward in PWS research recently, which gives us hope....but we need YOU to help get us over the finishing line and find the medicines and treatments to improve Aurelia's life and the lives of all PWS sufferers. It really is, in my opinion, from what I have witnessed thus far, an extremely cruel and challenging condition, in so many ways.
Any support offered to this amazing charity will have a DIRECT IMPACT on the journey towards an improved life for Aurelia and her PWS peers; to eliminate their suffering and to be free to choose their own way forward in life in what they do, where they go, where they live, who they live with, what jobs they do, where they go with friends.... Independent choices which we so easily take for granted but which are, for now, not available to PWS sufferers. We work towards an independent future.
Thank you for taking the time to read our story."
By booking John, you will be supporting FPWR UK
Anyone booking John in 2024, whether it be for a wedding, headshots or a family shoot, you will be directly supporting Aurelia and FPWR UK as John will be donating 10% of each fee received direct to FPWR UK.