Help to make our new performance.
We need to purchase a projector and pay for materials to develop the set.
Our show will tell the story of how Facebook saved our baby.
As well as sharing some of our deeply personal moments of hopeless despair, we will explain how an online network of perfect strangers gave our family a life we almost dared not dream of.
Audiences ask us to put our kids in our shows and that is what we're going to do. We'll use the projector to beam them in. This will enable them to participate in the telling of our shared story while cosy in their beds.
Working with a designer we will create an interactive set, (including homemade hydraulic elements) creating fun, surprising opportunities for audience members to take part in moments of performance.
The show isn't only for those who have experienced life-changing illness it is for anyone navigating the tricky path between cynicism and hope. It will explore developing global networks of individuals brought together by mutual struggle and celebrate our collective capacity to stride together toward progress.
The fear of falling for false hope almost left us struggling with years of sleeplessness, pain and depression. This close-call raises the question of how else such fears might hold us back.
In this time of 'alternative facts', anxiety about 'social media bubbles' and an ever-increasing volume of information we will celebrate critical thinking, research, discussion and collaboration. And we will do it with dancing, soaring speeches and exceptionally good music.
The show will be developed in several ways:
1 Feedback on the work as we make it by invited audiences
2. Workshops and showings to secondary schools
3. A creative writing online workshop for participants who have been through similar experiences, tackling debilitating eczema.
Thank you for reading, please consider sharing our project and donating if you can.
You can read more on our story below and listen to our conversation on BBC Radio 4's Listening Project using this link:
We will raise awareness of a common but misunderstood condition. Standard eczema treatment fails millions worldwide. For some eczema is a bit of itchy skin that is easily controlled through diet, emollients and occasional steroids. For others, it can feel like a life sentence.
Imagine you are riddled with chicken pox, covered in biting ants and you are wearing a suit of stinging nettles. Now imagine that the itching goes deeper into your bones and it lasts for years with almost no break.
Many patients just can’t gain control. There is more itching, more steroids, more antihistamine, the body is hyper sensitive to seemingly everything. They are even prescribed immunosuppressive drugs initially designed for transplant patients.
Our baby’s skin was oozing and bleeding. She could barely sleep the itch was so intense and her skin so inflamed. But luckily that’s not the end of our story.
Social media allowed us to talk to others in our position. Some of them were talking about a brilliant effective life-changing treatment. There was a doctor in South Africa who consulted with his patients via email. At first, we were understandably dubious and cynical. This is a story of triumph of hope over cynicism. The treatment works and we are now using it through the NHS. A group of ten has grown to more than 21,000 in less than three years.
For more on our story see Beating the itch with Dr Aron