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RARE parenting

Bernd’s brave new world

Life is never plain sailing. Winds change and we adjust our sails to stay on course. Bernd Rosenbichler shares his story of navigating RARE parenthood after his son’s diagnosis of Alström Syndrome dramatically changed the direction of his and his families’ life. This is his story.

Having a child with a rare condition changes you. In my case, without really realising, it changed my direction. 


Bernd and Ben

The Grand Hyatt in Shanghai was my dream. Sitting alone on the top floor in the bar or having a room with floor-to-ceiling windows and enjoying the view of Shanghai from the bed and a visit to the F1 race…can life be more beautiful? 

It’s 2009 and I’m in China for a year of work. Alone. My wife is in Germany, We haven’t had children yet. As a manager in the automotive industry, I was living my dream, to be successful, to earn money, to travel around the world – that’s what my life plan looked like. I didn’t have time for much more; a day has only 24 hours anyway – there is little space besides the job and your own goals.

I was living my dream, to be successful, to earn money, to travel around the world – that’s what my life plan looked like.

2021: I am now 47, a few months ago I left my last employer in the auto industry by resigning from my role as a ‘senior executive’. Which doesn’t happen very often. Certainly not in times of COVID. Turning my back on one of the most attractive and best companies. Leaving without an alternative. No backup, no network; no assets that carry you even close to retirement.

What had happened? 

Someone said to us, ‘Children are looking for their parents’. There is probably a lot of truth in our case. 

Ben was born in 2012. When Ben was six months old, we realised that something was wrong with his eyesight. Several examinations that lasted for years and finally a genetic test brought the certainty: it was not only an eye defect but a rare disease called Alström. A multi-organ disease with a low life expectancy. Around 1000 cases worldwide, with hardly any empirical evidence, research in its infancy. Conversations about ‘chances of recovery’ (which do not exist) included ‘decades’. The Wikipedia entry on the disease read like a medical horror story. 

​Nevertheless – with a very good medical network and great cohesion in Munich, we were able to understand our role as parents relatively soon. Someone said to us, ‘Children are looking for their parents’. There is probably a lot of truth in our case. Two rather selfish, successful people who can do more than just pant after their own careers. Now with a small man in our luggage who suffered from an incurable and difficult to understand disease.

Bernd and Ben

But what is this ‘being able to do more? Where to start? How to help where there is no help, but only hope that one of the many investigations does not provide a bad insight?’

Over the following years, something must have happened that was unimaginable for me. Ben taught me what is important. ‘Daddy, we are lucky people’ – is that what a child with such a disease who is almost blind says? Why is he always cheerful? In the evening he hardly falls asleep because he likes to do ‘nonsense’, in the morning he jumps out of bed in a good mood. He loves school; people as well; no matter what you do with him, he is there with joy and passion. Says daily how much he loves me. Wants to become a dustman and plays football. 

He gets hearing aids, calls them ‘Lauschis’ and is very proud. The cane made him even more proud, Ben explained every detail to me.  And we adults? Don’t we have such an ‘Oh my God’ reflex? And then your own child? What does that do to a father or a parent who knows that many things will not happen that way? That hard times will come; many dreams will remain dreams. There probably won’t be a solution to Ben’s problems in the next few decades. Pretty soon the last remnant of sight will disappear.

Ben taught me what is important. ‘Daddy, we are lucky people’ – is that what a child with such a disease who is almost blind says? Why is he always cheerful? 

Having a child with a rare condition changes you. In my case, without really realising, it changed my direction. It has – slowly – led to asking myself questions about how I can justify taking care of myself and the problems of others with dedication and a lot of effort, but perhaps too little about the fate of my own child.

A vision for the future

So now I am at the beginning of perhaps the most important journey of my life: to contribute to a topic that I do not understand properly and where my previous experiences and what I have learned hardly helps. But knowing that there are little activities on Alström — little research, no pre-diagnosis, and – so far – no chance of cure — is a helpful basis for understanding that just trying to improve something will be the way to go.


My goal is to establish a Center of Excellence – similar to what exists already in Birmingham, UK – in Germany. This should be closely linked to existing international activities to make efficient use of scarce resources.
 
For this purpose, a legally binding structure (non-profit organization) is created. The funding is to be supported by a campaign to increase awareness.
 
Click here for the new website will allow a first look at the planned activities. The website is also intended to build a community and exchange ideas between those affected and their relatives. To get in touch with Bernd please email: b
ernd.rosenbichler@yahoo.de

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