YO SOY LO QUE SOY
There are approximately 300 people in the world who suffer from a rare genetic disorder which prevents the process of full growth, called the Laron syndrome. In a remote region of southern Ecuador, there are roughly 100 people with this condition. German photographer Charlotte Schmitz (b. 1988) traveled to Ecuador to meet some members of this community and portrayed them for her series Yo Soy lo Que Soy (Spanish for ‘I Am Who I Am’). The photographs show people with Laron syndrome going about their daily lives and posing within their home environment, with their families and friends.
In her project statement, Schmitz details the account of how these people were convinced by a local doctor to participate in a series of experiments and research to discover new treatments for their condition, with the hope of receiving a hormonal cure that could help them grow. Despite the fact that the research resulted in the development of a medication for the syndrome, and the doctor benefitting financially from his research, the treatment never reached the people of the region. At a cost of $10,000 per patient, the medicine is impossibly expensive. Feeling exploited by the doctor, the people experienced a lot of anger and resignation that had agreed to be the object of his research. Schmitz spoke to a boy who never received the treatment that would make him grow larger, who end the end stated that he no longer wanted to grow. He said: “I am proud to be who I am”.