DOLORES

2017
In 2017 it was estimated that about 450,000 people worldwide were affected by the Amyotrophic Lateral Sclerosis (ALS), a fatal and progressive neurodegenerative disease which attacks the upper and lower motor neurons, causing an increasing loss of mobility and difficulties to speak, swallow and breathe.

Also known as Lou Gehrig’s disease, ALS affects people from all over the world regardless of hereditary transmission, ethnicity or socioeconomic condition and it manifests itself in a tragically unique way: while the body progressively becomes immobile, the mind remains alert. People affected by ALS maintain their capacity to perform high mental processes such as thinking, understanding and remembering. This delicate condition highlights the importance for us, their closest people, to provide them on a daily basis not only with care and support but also with occasions which help them to perceive, feel and sense. Considering the nature of the disease, for which there is currently no treatment, contributing our time to make the most of their means, above all, helping them to live every day to the fullest.

With my project, I aim to highlight the way in which the ALS has affected the daily life of the Masin family and the dynamics between its four components. Resident in a small town in the northeast of Italy, the family lives with the disease since, six years ago, it has been diagnosed to the mother, Maria Dolores, at the age of 54.








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