Documentary Photographer Peggy Ickenroth is the Edge of Humanity Magazine contributor of this documentary photography. From her project ‘Suzanne Living With Prader-Willi Syndrome’. To see Peggy’s body of work click on any image.
Shopping, going to a supermarket or going out for dinner are considered normal and activities for mothers and twelve year old daughters. But when your daughter suffers from the Prader-Willi syndrome these activities become extraordinary, if not impossible, because two of the most common problems are frequent anger attacks and being always hungry.
The Prader-Willi syndrome is a rare genetic disorder and only 1 baby out of 50.000 is born with it. Normally these people seem healthy, but because of the never ending list of problems like a strong obsession with food, having weak muscles, mental problems (they have a low IQ, normally around 60), malformation of the spinal column which causes problems breathing and many others, they do not function the same as healthy people. Suzanne is twelve years old, but emotionally she is like a five year old so she can not normally interact with girls from her age or go to a normal school.
Suzanne does not go out a lot because she prefers to be in places she feels safe, like home, school, judo, where she can predict everything.
Her parents and brother dedicate all their time and love to let Suzanne live a life as normal as possible. This of course causes often tensions in the family, but they love her so much that they it is worth it for them. In fact her mother says: we have to sacrifice almost everything for her, but she is a lovely, caring girl who deserves it. And all the love we get back for her pays back the effort.
By Peggy Ickenroth