Milly’s Story

So in mid-January 2017, we learned that our Milly had a very rare neurodegenerative disease called BPAN.

Markus and I were calm about the diagnosis, we had long left the stages of despair, fear and grief behind us and were internally prepared for a severe diagnosis. But we could not imagine that it was so bad. We hope that a drug or therapy will be developed before the degeneration process begins. Regardless of this, we want to go the way together with Milly and offer her a beautiful and varied life.

We informed family and friends who were all stunned and shocked. But in the days after the diagnosis I was curiously utterly euphoric. Finally certainty! I wasn’t aware how much I needed this clarity. I was in a “I’ve always been saying it” mood. It was just a confirmation of what I was always convinced of. Especially the fact that this genetic defect developed without any inner or outer influences calmed me down. I had done nothing wrong. On the other hand, that made it so unimaginable why it hit our sweet cuddly mouse. I doubted again: all this could not be true. A few weeks later I phoned the human geneticist and wanted to know in concrete terms. Couldn’t it have been possible that this mutation had occurred spontaneously because I had caught an infection or had unconsciously done something wrong? She answered explicitly with no. I went after it: What if I had lived next to a nuclear power plant during pregnancy, for example? Not even then. I could not have influenced the development of this genetic defect by anything at all. It was important to know that in order to be able to process this difficult diagnosis and accept the uncertainty of the future. I hope, however, that we will have many more wonderful years with Milly and that the degeneration process will only begin very late.

The certainty about the fate of our daughter released new energies in Markus and me. In the days after the diagnosis, we collected the sparse information that the World Wide Web provided through BPAN. We wanted to know what disease we were dealing with. It often frightened me to look this disease in the eye because it was so little researched and it is not yet certain what Milly will face one day. Markus, on the other hand, had less trouble letting the disease into our lives. He is a scientist and found many aspects of human medicine and molecular biology even very exciting, he intensively dealt with NBIA and BPAN.

But I still had an important concern. I wanted to help other affected families in similar situations. Since there are usually no self-help groups on site, I wanted to share our experiences via the Internet as a quickly accessible source. The idea of my own website was born.

Actually, I intended to tell Milly’s story only briefly. But the more I wrote and the more often I conjured up the horrors of the past years, the more comprehensive my writing became. Many details were no longer conscious to me at all and I relived the hope, the worry, the fear, the anger, the pain and the grief.

Gradually the website became more and more extensive. It wasn’t just about telling our story anymore. I wanted to encourage, give tips, share thoughts, show a way out of a situation I felt was hopeless. Thus, on Milly’s fifth birthday, 18.07.2017, www.millys-mission.de went online.

In parallel we found in the founders of the association Hoffnungsbaum e.V., the married couple Klucken, committed and courageous fellow combatants. In addition we joined the BPAN Facebook group. Above all the extraordinarily high commitment of the US families inspired and impressed us very much. Donald Trump had just been elected US President and it seemed as if not only we had to deal with a terrible diagnosis, but the whole world. The US families were not impressed and continued to collect donations to make BPAN research financially viable. Exactly this entrepreneurial spirit was an initial spark for us. I was unbelievably embarrassed to stand idly by while so many families on the other side of the ocean are highly active. It was clear to us that we too in Europe would finally have to get down to work in order to declare war on BPAN. By the end of 2017, Milly’s mission had evolved from a silent website to an online fundraising campaign, which we aggressively launched into the public eye.

It is a hard piece of work and not easy to establish the topic in public. We have to acquire a lot of knowledge, establish networks, initiate contacts, be patient and also suffer defeats. But the campaign is fun. We got to know interesting new people from the medical world and the media industry. We can contribute ideas, be creative, try out projects, develop ourselves personally. We can act instead of being helpless and watching what this disease will do to our child. Milly’s mission is therefore also a coping strategy, overcoming a serious life crisis.

Milly has changed our lives, but not negatively. We have gained a lot of insights and new impressions through Milly. Actually, we always wanted to show our little rascal the world, but now she shows it to us. Also within the family Milly has set so much in motion and broken up solid opinions. We had to and have to deal with illness, disability and death. But we also learn to separate the important things in life from the unimportant, to use the time and the now, not to remain in the past, not only to think about what the future could bring and not to waste time with meaningless stuff. I don’t get upset anymore about some trivial crap, who might think what about me etc. We have a completely different yardstick. Milly’s fate gives us many new insights that I wouldn’t even have thought about years ago. But as soon as one confronts the ghosts of life, approaches them, one loses the fear of them. A life is also worth living with illness and disability, can be just as enriching. Through Milly we got to know a lot of great people and made new friends. We are very happy and grateful about that. And we also saw who really stands by us in need.

Yes, it is not the life I had hoped for. But it is also not the disaster scenario that I have always imagined of a life with a handicapped child. I often read in connection with prenatal diagnostics that a handicapped child (and here above all a mental and/or severe physical handicap is meant) takes the meaning of life. The whole expenditure for what actually? I also asked myself this question after the diagnosis. But shouldn’t one first ask: What gives meaning to life at all? Isn’t life itself the meaning of life? You are born, you live, you die. Maybe it is as mundane as it sounds. Of course, we have some things in life in our hands, we can turn one or the other cog in our hands. But many things are not in our power. We have to take it as it is and find a way to deal with it. There is a nice quote from Schopenhauer: “Fate shuffles the cards, and we play”. We can also make life beautiful with the cards that life puts in our hands. Despite illness or disability you can give meaning to life. In any case, it makes no sense to mourn things afterwards that can no longer be changed or influenced. Milly will never race me. So what? So then she just rolls through life. The purpose of life is not to wait for our desires and expectations of ourselves and others to come true. For me, the purpose is to enrich the lives of others in whatever form through my own life.

Milly has made my life richer! And I want to consciously fill the time we have with her with life, for her and for us. It may not be the path I dreamed of for Milly and us. But it is a way and I may go it.

Updated 16.06.2019