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Alpha Mannosidosis is an ultra-rare disease that is genetically inherited. This condition causes the deficiency of an enzyme called alpha-mannosidase. This enzyme helps break down sugar molecules. When it is not produced correctly, sugars are not properly broken down and they build up, causing damage to different organs. To better understand her story, in one of the London snowiest days in recent years, we went to meet Saffron and her family at their home. Without knowing it, Saffron has been a pioneer and a forerunner for this complex and little-known disease, and those coming later will look to her experience as a story to know. At the same time, her life path is full of sensitivity, sweetness and parental love.

We flew to London for Saffron’s portrait. A big snowstorm had just finished and a great confusion reigned over the city. But, as soon as we stepped inside her house, we felt a great calm and the profound love of her parents for her. When I took her portrait, she decided to take it with her favorite puppet, and her sweet smile moved us to tears.

Settimio Benedusi, the photographer
Settimio Benedusi


Gianluca Dotti


Alpha Mannosidosis