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The need to be happy


One in every half a million: this is the estimated prevalence of Alpha Mannosidosis, an ultra-rare hereditary disease due to the deficiency of the enzyme called alpha-mannosidase1. People with this disease can experience a variety of symptoms with different degrees of severity.
This means that it is hard to predict the progression of the disease and the related impact on the quality of life, which can be summarized in one single word: uncertainty for these families. Early diagnosis, together with access to treatments, is the best chance of slowing the disease progression, and can provide relief to patients and carers. We went to Transylvania, in Romania, a four-hour drive from Bucharest, to meet Maria, mum of Peter, a boy who has faced a very long journey before receiving a diagnosis.

For this portrait we went all the way to Romania, almost to the border with Moldova, where Peter’s parents have a simple but cozy diner. Peter was shy, aloof. However, when he brought coffee to some workers nearby, he showed a wonderful, powerful vitality, that clearly shows through this portrait.

Settimio Benedusi, the photographer
Settimio Benedusi


Gianluca Dotti


Alpha Mannosidosis