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 never feeling full after eating, 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.
Unfortunately, PWS is still generally unknown, and this often creates awkward situations. You can't always tell that Suzanne is a sick child, therefore she sometimes seems just a lazy and spoiled kid, for example when she gets an anger attack because she doesn't get things her way or when her parents ask for extra attention when they visit a doctor because her symptoms are different compared to healthy people.
With my project I want to show first of all what an amazing girl Suzanne is, because she is determined to fight for what she wants, like playing the violin while she can't read. She is a sweet and fun young girl that despite her struggles and pains knows how to make everybody laugh.
I hope that the photo's and video will create a bit more understanding for who lives with the Prader-Willi Syndrome.
The photo's where taken in November and December 2013 in Heythuisen, The Netherlands.I'v also created a photographic video with interviews, you can find this video at the following link:
https://www.youtube.com/watch?v=E1vxd6HKUiY
