More Unique Than Rare

Photography by Ilaria Marchione
Nicolò is a ten-year-old boy suffering from Treacher Collins syndrome, one of the rarest genetic diseases that affects one individual out of 50,000 live births. It involves mild or serious facial anomalies due to impaired development of the bones or tissues of the face. Nicolò underwent 36 surgeries from birth to date. 
I have been carrying out this project for two years, against discrimination and against bullying, to document this world of people who experience great difficulties every day, but from whom we can learn a lot. The project is extended to other pathologies, to study their characteristics and to one day be able to create something significant, something that gives space to the world of fragility, which needs to be seen, heard and above all protected. 
March 2023