Roberto

Huntington’s disease

I met Roberto and his family when I visited them in April in Juan de Acosta, in the Atlántico State of the Colombian Caribbean coast. Juan de Acosta was considered the second largest HD cluster in the world, although many affected families have left the town in the recent years.

We visited his family as part of a trip to document the lives of Colombian families suffering from Huntington’s disease. At this time, the Guardian journalist Dara Mohammadi accompanied me in a two-week trip through various communities in Colombia. An article was published at the Standard (the Sunday edition of The Guardian) after the trip (you can find the link here)

Roberto used to work picking stones from the river next to his house. A house that gets flooded every year because that same river overflows during the rainy period. Many Colombian towns and cities have been expanding with little urban planning. The differences between the rainy and dry seasons lead to frequent floods. For impoverished people, this is disastrous as they can easily lose everything in one flood. When one combines this with the fact that patients have difficulties walking (and eventually can’t be mobile at all), one can see the gravity of the situation. Roberto came to hear us at the local hospital earlier in the day. I sat next to him during the entire morning. He has early stage HD, without much chorea but with facial dystonia and has difficulties walking. He speaks little, but smiles often. He is a very handsome man, dark skin and hair, gentle face. He reminded our friend Dara (the Guardian journalist) of a young Bob Marley with short hair. He smiled when he was told and said that people had mentioned this to him before too. His wife and his two at-risk kids (ages 16 and 13) allowed us to take family photographs in front of their house, next to the river that floods and threatens their home and their livelihood. Initially they were serious and nervous. They are not used to being watched and photographed. I told them that they should smile, that they were a wonderfully handsome family. They did. And the portraits were beautiful and inspiring.