AADC Documentary and 2020 Intensive
At the Spiral Movement Center we are passionate about healing and bodymind and occasionally we find a connection with an organization or a group of people who share our vision. Our most recent collaboration has been with the UK organization the AADC Research Trust, which advocates for children with an extremely rare genetic disorder known as aromatic l-amino acid decarboxylase deficiency, affecting only roughly 150 people worldwide.
AADC is genetic syndrome where the enzyme necessary for efficient neurotransmission is lacking—consequently the children affected with this condition often suffer from Parkinson’s disease-like symptoms and are unable to properly move their bodies. Without treatment, most children with this condition show minimal motor development and must spend most of their lives in wheelchairs. The ironic part of this condition is that often the cognitive abilities of these children remain normal despite the severe limitations of their bodies—they are literally trapped in their bodies without the means of leading normal lives.
A recent medical procedure called Gene Therapy has restored hope to families with AADC children. In this procedure, pioneered by Polish neurosurgeon Professor Krystof Bankiewicz, a virus containing the appropriate DNA fragment is injected into the Substantia Nigra region of the brain. Children undergoing the procedure have often experienced a physical awakening after this treatment—their brains becomes flooded with new neuropathways when neurotransmission is restored and their bodies become alive.
ITV news report of Hallie's gene therapy. Photo: ITV
Immediately after surgery, many children experience dyskinesia, a morbid condition of the nervous systems where there is excessive, flailing movements of the limbs. This initial dyskinetic phase subsides over a period of 4-6 months and it is after this period that children begin to regain voluntary control over their bodies.
Lisa Flint, the chairman of the AADC Research Trust, is currently conducting a research project to document the progress of 9 children who are currently undergoing gene therapy. We have been enlisted to provide new somatic interventions to help AADC children navigate through their gene therapy journey. In October 2019, founder Yuji Oka travelled to the UK to assess some of the children involved in the project. We hope to return again in January 2020 to follow up with the children after their Gene Therapy treatments and then return once again in July 2020 to implement a full 2 week intensive which will involve daily sessions of therapy for all participating children.
As part of the research documentation, we hope to film a documentary about the progress of these children as they go through each phase of the Gene Therapy process. The filming has already begun and the initial results have been promising. Each week, we are discovering more and more about the treatment of this rare condition. It is a fascinating process as many of these children must re-learn movement from scratch. Through Adapted Spiral Praxis, we are confident that we can help these children through each step of the healing process and bring them to a place where they can re-gain awareness and confidence in their own bodies.
The videos below include footage of preliminary treatments of children with AADC through Adapted Spiral Praxis and Gene Therapy. Please help us with this project by donating to our Patreon page—donors will help provide us with the necessary resources to complete filming as well as to cover the costs of equipment shipping overseas. As a donor, you will receive intimate, behind-the-scenes footage, a blog of the children’s progress, and other benefits as we make our way through this incredible bodymind adventure.