- I am who I am - (2013)
75-year old Maria Judith del Carmen lives together with her two sisters in a small apartment in Canton Piñas, situated high up in the mountains of Ecuador. With her exceptional high voice Maria Judith, who only measures 85 cm, explains that »small« people always have been part of her family – her parents and eight siblings are however of normal size.
Approximately 100 people are currently living with the conditions of the Laron-syndrome in the remote regions of South Ecuador, all of them suffering like Maria Judith under this rare genetic disorder which disturbs the process of growth, and thus prevents the body height to exceed the 1.30 m. The body size after birth does not differ from other children, however children with the Laron-syndrome will henceforward only grow a few centimetres per year. Until now there are a little more than 300 people in the world living with this condition.
Dr. Jaime Guevara-Aguirre, a doctor from Quito, started 25 years ago to research this genetic phenomenon in the Southern region of Ecuador for the first time, and thereby discovered that the syndrome in fact prevented the formation of cancer and diabetes. Through further research together with American doctors, he hoped to find a treatment against these diseases. In return to the long-standing examinations the Laron-patients had to go through, Dr Guevara-Aguirre promised to compensate the descendants with the appropriate medical treatment that was supposed to enable a normal growth.
In the 1990s the people agreed, beside the extensive examinations conducted by Dr. Guevara-Aguirre, to participate as probands for a human growth hormone. In hope to grow, some even travelled with the doctor to Quito and the US and made themselves available for extensive medical examinations. The medical knowledge conducted from this study led to the development of a medicine, which is now available since years. However, the doctor from Quito has never purchased the promised medicine to the people. The Doctors has financially benefit from the researches, he took blood samples from his wards, he exploited their bodies for all sorts of examinations, but no help is forwarded to the people suffering from the syndrome.
15-year old Alex was also always promised that soon he will start to grow. In school, his classmates hastily celebrated with him »he's growing, he's growing« – yet the medical growth hormones never arrived. The medicine is too expensive, and with a value of approximately 10,000 $ per patient it is impossible for the families to pay for this treatment.
After living a long time with empty promises, Alex decided that he does not want to grow any more. As the constant disappointments were too big he made up his mind: «I am proud to be who I am«.