Coming Soon

Blazing the trail

Thomas

A rare disease often means uncertainty, due to the limited amount of information around the condition. Sometimes one can unknowingly realize to be a forerunner and pioneer, tracing unexplored clinical routes, then becoming the point of reference for those who will come after.
This is the case of the story of Thomas, an Italian child who, at a very young age, received a diagnosis of Alpha Mannosidosis, an ultra-rare genetic disorder affecting the central nervous system and many other organs. We met his parents in Ancona (Italy), who take care of him and now have a certainty: facing the diagnosis of a rare disease requires courage and determination.

Thomas is a small, sweet, and lively child. He was very excited about our presence and with pride he took me to his bedroom. There he calmed down and showed me all his strength and love for life, the one that everyone can see in this portrait.

Settimio Benedusi, the photographer
PHOTOGRAPHER
Settimio Benedusi

INTERVIEWER

Gianluca Dotti

DISEASE

Alpha Mannosidosis