Through a child's eyes in conversation with Bernd Roesenbichler

Ben creating his artwork photographed by Diana Weidmann, dianaweidmann.com ‘Rock n Roll’ painting by Ben

Looking back, mostly the last 25 years, I was the typical selfish guy looking after my career. Family then wasn’t really my highest priority. We had a good life. We had lived in Dubai, in China, travelling a lot, working a lot, and enjoying life. Then Ben came along.”

BERND ROSENBICHLER

In the early days, the family did not suspect anything was wrong and Bernd continued his hard-working lifestyle. Slowly they realised there was an issue with Ben and it took four years to get a diagnosis of Alström syndrome. The inability to do anything about his son's diagnosis and the overwhelming feeling of helplessness started a shift in Bernd’s approach to life. “You are so helpless and we found ourselves just waiting and hoping that things would not get worse. At the same time, I was watching a little boy growing up, who despite his difficulties, seemed to be the happiest person on earth. He said to me ‘Daddy, we are the luckiest people on Earth, I never want to grow up because I have the happiest childhood’. He is always smiling. He loves people. He is happy when he goes to bed and when he gets up in the morning."

‘Gold’ painting by Ben

We tend to always see the dark side of the moon and then you see a little boy who shows you every day to appreciate life. To enjoy it and to do so even with his limited capabilities. He has never once complained.”

One of the ways in which the syndrome affects Ben is that he has very little sight. The day Ben received his stick to help him navigate the outside world was a difficult one for Ben’s parents and yet, as with everything else in his life, Ben took it in his stride and found joy in it. “He opened the box and said ‘Daddy, look what I have, it is like a sword. See what I can do!’ I was like wow, he’s showing us how to behave and how we should not think about the negatives but to be proud and to appreciate it. It was the same with his hearing aid and so many other situations.”

Slowly there was a shift in Bernd’s attitude and he started questioning what he was doing and reassessing his life. It was at this point he walked away from a high-flying career with the determination that whatever he did had to be positive. It is important for the family that people see Ben’s art for what it is, and the art comes first and foremost. It is not about pity or a child who is suffering. They want people to look at the pictures and create their own interpretation of what they are seeing positively. When Bernd was trying to work out what he wanted to do he realised that it was important to create awareness, particularly as there are only around 20 people in the whole of Germany with the same condition. Whilst exploring how best to do this he considered what he had to offer and it was at that point he realised the importance of sharing their own experiences and the positive attitude that Ben has regardless of the impact of his condition. It was from here that the idea to display Ben’s art was formed.

He ran a Kickstarter campaign and started developing the website. It was an opportunity for Ben to show the world that people’s perceptions of what is right or wrong should be challenged. Ben has very limited sight, with only around 5% vision and he has never been able to see colour, yet his images are filled with joy. He paints how he sees the world. As a family, it is important for them to fill Ben’s life with positivity and for him to know that he can achieve anything he wants to. One day they were listening to music by Andrea Bocelli and Bernd explained to Ben that he was blind. It was such an important moment for Ben to learn that someone could achieve so much and not be held back by their disability. Bernd reached out to Andrea Bocelli and told him about Ben. They were fortunate to be invited to meet him and listen to him perform. During that meeting, Ben presented him with a letter he had written to him in brail and they talked about it together. At the end of their chat, he told Ben that he could achieve anything he wanted to in life. It was a wonderful opportunity and his words of

I want to show the world how incredible Ben is, this is why I set up his online gallery to show his art. His paintings are such an expression of who he is. It is important that the world sees Ben for who he is and not as someone suffering from his condition but embracing life.”

We once had a conversation about giraffes, Ben really loves them and I suggested he paints one but he said ‘how can I do it because I don’t see the colours’. I said, who cares? Paint it as you perceive it. It’s your normality, and nobody else can judge if that’s right or wrong. At first, he was totally surprised and said, ‘Really, daddy, is it ok?’

Ben in action!

Alström syndrome is a rare condition that affects numerous body systems. Many of the signs and symptoms of this condition begin in infancy or early childhood, although some appear later in life. Alström syndrome is characterized by a progressive loss of vision and hearing, a form of heart disease that enlarges and weakens the heart muscle (dilated cardiomyopathy), obesity, and type 2 diabetes (the most common form of diabetes), and short stature. It can also cause serious or lifethreatening medical problems involving the liver, kidneys, bladder, and lungs. The signs and symptoms of Alström syndrome vary in severity, and not all affected individuals have all of the characteristic features of the disorder.

There is little research into the condition and therefore it is hard to predict how the disease will affect Ben in the future. He has little sight, his hearing is down to about 60% and whilst we hope that remains stable, it is an unknown. One of the other difficult aspects of the condition is the need to control his weight and this is particularly difficult as he cannot control his hunger. “We have explained to Ben how important it is for him to take care with how much and what he eats. Fortunately, we knew it would be an issue early enough so we could get him used to healthy eating. He understands that if he feels he needs to eat lots, he can eat as much as he wants of salads and similar. Of course, we want him to have as normal a childhood as possible and so at birthday parties he can have sweets and other treats. It really is a challenge to help him manage this aspect of the condition.” Art gives so much to Ben and his family. It provides a boost to Ben’s self-esteem whilst bringing a glimpse into his world for those around him. His positivity shines through his images and, as Bernd explained, it is important to first see the art, then the child and lastly his condition. His condition is very much part of his life but it does not define him.

‘Farbenwelt 2’ painting by Ben See Ben's beautiful art work at https://bens-art.de/

ASUK have created a global patient registry. This information will build a worldwide picture of Alström Syndrome, improving the knowledge and understanding of Alström Syndrome. We aim to make a real difference to everyone living with Alström now and in the future.

Further information about ASUK can be found at www.alstrom.org.uk