Suzanne, Living with the Prader-Willi Syndrome, 2013
In the series Suzanne, Living with the Prader-Willi Syndrome Dutch photographer Peggy Ickenroth portrays twelve year old Suzanne living with the Prader-Willi syndrome. Due to Suzanne’s frequent anger attacks and constant hunger, everyday activities such as going to the supermarket or going out for dinner have become challenging, if not impossible. The syndrome is a rare genetic disorder which occurs in 1 out of 50.000 people and manifests itself in a strong obsession with food, weak muscles, low intelligence, malformation of the spinal column which causes problems with breathing, and many others. Although seemingly healthy, people with Prader-Willi syndrome do not function the same as healthy people. Suzanne emotionally functions as a five year old girl and cannot interact normally with other girls her age. She does not go out much because she prefers to stay at home, at school or judo, where she feels safe and where she can predict the course of the day. Her parents and brother dedicate all their time and love to let Suzanne live a life as normal as possible. Although this sometimes leads to tensions in the family, it is worth it because they love Suzanne so much and they get so much love in return. Ickenroth documents how the syndrome affects the lives of Suzanne and her family, showing Suzanne’s craving for food, her need for order, and her fierce personality to reveal both the syndrome’s struggle and it’s beauty.
Peggy Ickenroth (1986, NL) graduated from Libera Accademia di Belle Arti Florence, IT, in 2014 and currently lives and works in Dublin, IE.