Claroscuro
| 2013 |
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documentary, 58 min.documentary, 58 min.
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Synopsis |
español
La historia de niños cuya piel no soporta la luz del sol, ya que tendría consecuencias mortales. Sus vidas cotidianas en un ritmo invertido a la noche, su desesperación y sus momentos de felicidad, su frágil existencia.
english
The story of children whose skin cannot be exposed to sunlight as this would have lethal consequences. Their daily routines shifted to night-time, their desperation and moments of joy, their fragile existence.
deutsch
Die Geschichte von Kindern, deren Haut kein Sonnenlicht erträgt, weil es tödliche Folgen hätte. Ihr Alltag mit dem in die Nacht verschobenen Rhythmus, ihre Verzweiflung und ihre Glücksmomente, ihre fragile Existenz.
Long synopsis in English
The film portrays the lives of three children and two teenagers who are affected by the rare genetic skin condition, XP (xeroderma pigmentosum). With this disease, exposure to UV radiation causes irreversible damage and in the worst case lethal skin cancer. The film is set in Cuba, where XP is ten times more prevalent than the world average. The government responded by developing a relevant national programme. The film shows the final week-long summer camp that took place before this programme was discontinued for financial reasons. Moments of isolation experienced by the sufferers at home are thus contrasted with moments of collective joy during the nightly excursions at the summer camp. But the film also shows the struggles involved in dealing with the disease. Over time, those who comply strictly with the safety rules and remain shut in at home behind blacked out windows waste away and risk becoming depressive; those who go outside during the daylight hours and ignore the illness suffer skin damage and its unpredictable consequences. The mother of one of the affected children, who also suffers from the illness, dies during the three-year shoot. It is a dilemma between obedience and freedom, where either option comes with a heavy price. The children and teenagers experience this dilemma in a quintessential, heightened manner, lending the film a universal human dimension.
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