Always Hungry With Prader-Willi Syndrome | Suzanne’s Story

For Suzanne, eating is the biggest satisfaction

 

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.

 

Dinner time. Since Suzanne is on a continuing diet, her parents serve her food on a special plate to make it look fuller.

 

Suzanne and Gonny on their bike. Suzanne will never be able to ride a normal bike, therefore she has this special one that she can ride together with another person.

 

Gonny, Suzanne’s mom, is brushing her hair after Suzanne has had a panic attack.

 

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’s spine is in such a bad condition that it’s crushing her, therefore she needs to wear this brace all the time.

 

Gonny is checking Suzanne’s teeth after she brushed them.

 

During the days that I’ve followed Suzanne, I saw many sides of her; happy Suzanne, sad Suzanne, excited Suzanne etcetera. I feel like if in this moment I’ve seen the young woman that is inside of her.

 

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 stuffed animals are very important to Suzanne and so is order. When she watches TV, the animals watch TV with her, but only after being perfectly aligned.

 

Suzanne during her Judo class. Since her body only burns half the calories compared to the body of a healthy person, physical activity is very important.

 

Setting up the table with her favorite place mat.

 

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.

 

See also:

By Peggy Ickenroth

 

 

 

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