Chris Müller
My child has an incurable disease - but I will never give up
Back then we had no idea what this diagnosis would mean for us. A few months later we found out. Our baby suffered from severe infections. We spent weeks at the intensive care unit and our baby needed oxygen. But that was just the start.
During that time I realized that our baby will struggle with chronic coughing, severe pneumonia and massive digestive problems all his life.
Even worse: The average life expectancy of mucoviscidosis patients is currently 40 years at most. A sentence that I can’t and don’t want to ever accept, and never will.
A method for harnessing fear
After this severe metabolic disease was diagnosed, I felt like a zombie for weeks. Somehow I functioned, but I wasn’t really there.
I just wasn’t able or willing to accept this diagnosis. That’s why I was convinced from the start that I would have to act and not surrender to this fate too soon.
We can’t let fear control us, but we can transform it into energy and become active. It was clear to me that I would mobilize everything I could think of so that my child could live a mostly normal life.
This resulted in a project that should give all mucoviscidosis patients a new perspective. Our goal is to eradicate this still incurable disease in the next ten years. We want to rid the world of this scourge.
The medical field constantly brings new success stories in the battle against seemingly unrelenting diseases. I’m now 43 years old. When I was young, we first heard about AIDS, which was a certain death sentence at the time.
Massive campaigns to raise donations in the millions became a huge step in the fight against AIDS. Two decades ago, who would have thought that AIDS would become so treatable during my lifetime?
This motivates me to continue fighting against my child’s disease and dedicate myself to a vision. And my method is to harness my own fear of suffering.
ATMOS – a silver lining on the horizon
We have planned something enormous, but it always starts with just an idea. Our vision is: We will build a city. ATMOS will be avant-garde, a sparkling emblem of the good life – a silver lining on the horizon, for our child, everyone who is affected and their relatives.
Because as the director of development, design and artistic agendas at Tabakfabrik Linz, I know that we contribute to improving our society by forming spaces and ecologies – I’m aware of the power of positive visions.
My aspiration for ATMOS is to create a place for hope and research. Patients will recuperate, scientists will research, creatives will innovate and muses will kiss.
This will be my contribution in life. Not because I would have chosen it, but because that was how it came to me. Thanks to the entrepreneur Erwin Soravia, I met the perfect architect for such a place: Wolf D. Prix from the Viennese architecture firm Coop Himmelb(l)au – a warmhearted maker of worlds. He designs buildings that stand for innovative power and the future (here you can look at his buildings, such as the ECB headquarters in Frankfurt).
We talked about our ideas over a barbecue. All night long. At dawn, they said: “Listen, we’ll help you. We’ll do this together.” That was three years ago.
Since then, Wolf D. Prix has designed a resort that looks like a biomechanical temple of the muses and suggests the function of a breathing lung. Thanks to an ingenious system, the ocean air sweeps from the outside into every room – you could think of it as a Mediterranean inhalation machine.
This provides incredible relief to mucoviscidosis patients. The genetic defect causes many organs to produce a viscous mucous. This is especially severe in the lungs, where the intricate capillaries stick together and actually cut off the air to the patient’s lung. That is why our child must have special inhalations three or four times a day.
With its high salt content, the ocean breeze loosens the mucous and lets the patient expel it with coughs. And inhale. The concept of a resort that is penetrated by ocean air is unique and functions like an oversized inhalation device – mucoviscidosis specialists have confirmed this.
200,000 Euros have been raised for studies and works on this project so far. We want to create this building with investors, which is why we are now making more public appeals. We are looking for the right property, funders, operators and allies.
Fighting the most common hereditary disease with the greatest possible means
As we started our Facebook page, we quickly saw how much the initiative struck a chord with the affected families. We keep receiving letters and thank-you emails. Accomplished specialists are also giving us excellent feedback.
We are now focusing even more intensely on mucoviscidosis research. According to CF Austria Verband and Netdoktor, mucoviscidosis is the most common hereditary disease in our society. In Austria, a child with this diagnosis is born every 15 days, while Germany has about 200 such births a year.
We are already feeling the strong public solidarity and desire to help. There a numerous supporters even now, but we need more to bring ATMOS to life. It will be a long and intense process.
We are also using the public-sector medium to collect donations – not for the building construction, which is being financed privately – and we will distribute these: half of the funds will go to research and the other half to immediately help affected families.
We are dealing with this well by now, while other families are impacted more severely and urgently need this assistance. These are the people we want to support.
Even before this diagnosis, my wife and I were committed to social causes. I do pro bono work for the Volkshilfe public aid association; my wife has already helped severely disabled people before our children were born and is now studying social work.
Dr. Maria Dietrich, a longtime friend of the family who has great expertise in the health, social and communications sector, has furthermore decided to join ATMOS full-time as a pivotal and central point to proactively advance the project. We are now working on this great idea and hopeful vision together. My family gets strength from ATMOS, as well as from these particularly beautiful moments: In a dark hour, I recall the birthday parties or a great excursion with the kids. Because I don’t know how much more time the disease will give us.
With ATMOS, we have a beacon on the horizon that we can look at, that we can look forward to.
This text was published at www.huffingtonpost.de/chris-mueller