In the project, we try to express what it means to be a parent to a child going through the process of a rare disease diagnosis. There are around 800 known rare disease diagnoses, and for a disease to be rare only 1-2 persons for every 10.000 persons can be diagnosed with it. When you are the parent of a child being diagnosed due to developmental delays, medical events, or other kinds of symptoms, you suddenly find yourself immersed in a process characterized by great affective and emotional uncertainty, as well as heavy logistics including numerous encounters with professionals and systems within public healthcare- and administration. Often this has a huge impact on the well-being of the individual family members, as well as on social relations within the extended family, friends, and more.
The work uses dramatization based on interviews and diaries. Four professional actors portray the parents in the video.
The work is a collaboration between Mogens Jacobsen, Jonas Fritsch, and Christopher Gad.
The interdisciplinary research project "Data as Relation: Governance in the Age of Big Data" commissioned the work.
Thanks to:AIR Lab at the ITU
ETHOS Lab at the ITU