Monday, July 23, 2018

Marlena Waldthausen traveled to Austria with financial support of the Postcode Lottery Fund. Here she follows Mohamad, who is eight years old, but a rare genetic disorder called Cutis Laxa makes him look like an old man. He has the stature of a young boy but his skin is covered with wrinkles.

„Schwimmen?“ he asks and smiles his big smile. I nod. „Jaaaaa“ he screams enthusiatically – I wonder how long his lungs can hold that „a“ – and starts running around the house gathering everything that might be useful. Water wings, swim ring, inflatable crocodile. He shows me the red football-printed underpants he is wearing, grining „Ok?“ Just to answer himself the next second „Ok!“ and jumps out the door to ride his small donated bike to the shore of Lake Constance like there is no tomorrow. 

Once at the part of the shore where you don´t have to pay to get in the water, he throws his bike on the grassy ground then runs towards the water while pulling out his t-shirt. People look at him, confused. Some start to whisper.

Mohamad playing in the water
Photo: Mohamad playing in the water. © Marlena Waldthausen

Mohamad meanwhile reaches the water, turns around and proudly shouts „Mohamad. Wasser. Erste.“ Mohamad is eight years old, but a rare genetic disorder called Cutis Laxa makes him look like an old man. He has the stature of a young boy but his skin is covered with wrinkles. His ears are unusually big.

Mohamad was born in Syria as the first of three kids and raised in several refugee camps around Iraq and Turkey. There was almost no medical care in the camps and certainly none that specialised in rare disorders. Mohamad‘s parents were told by a stranger that their son suffered from progeria and would likely die by the age of 14. They arrived in Austria as legal refugees a few months ago. Only then a series of tests revealed that Mohamad‘s condition only affects his skin and does not in fact lower his life expectancy.

Mohamad and his sister Nada watching TV, trying to catch some German words
Photo: Mohamad and his sister Nada watching TV, trying to catch some German words. © Marlena Waldthausen

I first heard about Mohamad about one and a half years ago and I couldn´t forget his story. So I started my research. When I finally got the Facebook contact of his father, I was told that the parents didn´t want any journalists near their son anymore. It took me months to win their trust and before I could go and visit them in Turkey, they received the authorisation to come to Austria as legal refugees. 

When I met Mohamad for the first time, he and his family had just arrived in the Austrian mountains. With the support of the Postcode Loterij Fonds I am now able to follow Mohamad during his first year in Austria.   

Mohamad when he first arrived to the Austrian mountains
Photo: Mohamad when he first arrived to the Austrian mountains. © Marlena Waldthausen