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As a parent don’t give up


Alpha Mannosidosis is an ultra-rare genetic disorder that causes the deficiency of an enzyme, alpha-mannosidase. This condition affects multiple organs,  including the central nervous system. It is diagnosed in approximately one in 500,000 live births worldwide1.
This video tells the story of Haiko, a German boy who is facing his own complex path to adulthood. We talked to his parents, who have always taken care of him, meeting them in Parma, in northern Italy. The path that awaits Haiko is not, nor will it be, simple. But it is not difficult to put together the keywords that can make it a little less complex: inclusion, having a job, scientific progress and the love of those around him.

Little Haiko was understandably bewildered by all the fuss around him. But, as soon as he saw his dog, he relaxed and his shyness disappeared, and while posing for this photo he showed us all his sweetness.

Settimio Benedusi, the photographer
Settimio Benedusi


Gianluca Dotti


Alpha Mannosidosis