This multimedia project is an investigation into the experiences for the Usher family living with Darcy who was recently diagnosed with Rett Syndrome. The documentary explores multiple aspects of family life not limited only to Darcy and her syndrome. Narrated by the parents, the documentary comprises both still imagery and video to effectively translate the entire family’s experiences since the diagnosis. Spanning almost eight months of research, this is an intimate piece, about the Usher family’s reconciliation with their daughter’s diagnosis. Rett Syndrome is a disorder that is relatively unknown, even within the medical community. The project aims to describe the experience of living with Retts to create empathy and awareness of the disorder.

This project began shortly after my partner’s god-daughter Darcy was diagnosed with Rett Syndrome in April 2011. Living in the Northern Territory of Australia, access to the family was either all or nothing; Jackie (Darcy’s mother) calls it the “baptism of fire”. I spent two weeks with my partner investigating all aspects associated with Darcy’s family and the disorder by camping out in a tent behind their shed. It wasn’t until the last few days of our time there that I even began to comprehend what the project would eventually entail. I was to return a few months later with a greater understanding of the syndrome and my partner and I were amazed by the progress that Darcy had made in the time since we had last seen her. It was incredible to see just how much I had missed on the first trip, as I tried to focus on aspects of the family life outside of direct interaction with Darcy.

It is my hope that after watching this documentary it will become apparent that Darcy (and all the other Rett girls) are more than just the label Rett syndrome.

For more information on Rett Syndrome please visit:

Rett Syndrome

Rett Syndrome Research Trust

Girl Power 2 Cure

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