The topic of family planning was taken up at an early stage with the diagnosis of ALS.

We had only just met in September 2011. Daniela finished her studies in Lausanne and got a job at KAPO Aargau (State Police). In order to get to know people in the new environment, she decided to join an sports club. Since she had played volleyball before her studies, it was obvious that she look into our club BTV Aarau Volleyball.

I had been working as a trainer with BTV Aarau since 1991 and at that time I was coaching the team, which Daniela joined. By spring 2013, the friendship developed into a relationship.

In spring of 2013, I managed to get a doctor's appointment. At the end of 2012, I developed occasionally a feeling of numbness in my left hand for a short time and this repeated itself more and more and finally forced me to stop training.

The following examinations resulted in the first diagnosis of "probably ALS" in October 2013. The changes to be expected from this indicated a massive turning point for our future together.
Daniela is 16 years younger and was 27 years old at the time. We were only at the beginning of our relationship and a difficult path was emerging, not only for me, but also for Daniela as a partner. So it was immediately clear to me, that I wanted to offer her an opportunity to leave the relationship. It didn't seem right to claim any expectations.
We had a conversation in which we looked at the situation and possible developments. Here I also gave her the option to leave the relationship without having to feel any guilt. She shouldn't be spending her young life taking care off a seriously ill partner and going through a painful experience in the middle of her life.
I was very surprised when Daniela decided to take the path together, without any hesitation. It filled me with a lot of joy. However, I let her know that she may change her decision without hesitation in the coming weeks.

We knew from our doctor that this disease has a linear course and that after a year of medical supervision you have an approximate reference point about the expected time horizon. In the course of this year we also had conversations about getting married and the meaningfulness of having a child. There was nothing to say against getting married, so the further discussions focused on the topic of having a child. We also asked my doctor whether there was any experience from other families. As far as she knew, our situation was unique. But there were other patients who already had children. She had not received any negative feedback from any of these families. She explained to us, that the experience has also been made from other drastic life situations, that children who grow up in such circumstances from an early age do not perceive this situation as either unnatural or stressful.
The most challenging topic for us was, how would a child deal with the potential early loss of a parent. We could not really answer this conclusively, but due to the one-year reference time, the prospects for 5 years and more, were very likely. My personal assessment, from a purely technical nature, led me to believe that 10 years can be quite realistic. We were convinced that our social environment would offer the necessary support and our parents lived in the vicinity. That year I also took part in an ALS study in Sweden, from which we received the information as to whether I had the hereditary variant or not. After it turned out that I did not have a hereditary variant, the decision was made to have a child.

We planned our wedding for September 2014. We agreed to only marry in a civil ceremony, as a church wedding has no deeper spiritual meaning for both of us. We wanted to use our financial possibilities to the full for an extended honeymoon and experience one or the other desired destination together and without illness-related restrictions. Our 10-week trip took us to Singapore, visiting relatives in the Philippines, walking on the Great Wall of China, eating sushi in Japan, an adventurous round trip in Thailand, visiting good friends in Australia, and finally on a cruise in the Caribbean. With the desire to have a child in the back of our minds, we decided that pregnancy could only occur from Thailand in order to not make our trip unnecessarily difficult. In Australia, Daniela felt the need for a pregnancy test, which then turned out positive. As it turned out afterwards at the gynecologist, we had implemented our planning perfectly, because Melissa is a Thailand child.

Melissa was a lively child from the start and kept us busy at times. Since the course of my illness was very slow, I was able to take Melissa in my arms at the beginning, carry her around in the Babybjörn or play with her on the floor. The onset of weakness in my left hand and fingers meant, that I couldn't hold Melissa still while changing diapers and put the diaper on at the same time. So there was a clear assignment of tasks: I played the clown to distract Melissa while Daniela changed the diapers.

In the first two years we were able to set up a good work schedule so that Daniela could find enough rest and bedtime, despite my work-related absence and progressive restrictions. For example, we used our large nursing pillow as a rest for my arms so that I could give Melissa the bottle or hold her in my arms despite the lack of strength. After dinner, Melissa was breast-fed again and I then carried her in the Babybjörn until midnight. This gave Daniela a four-hour sleep break. Then I could go to bed and go to work the next day.
This worked very well and the fact that we got Melissa used to a more or less fixed eating rhythm right from the start, made it possible for us to have a more relaxed day and night routine, with predictable rest times.

At the end of September 2017, my mobility came to the first major restriction when I returned my driver's license. At the end of March of the following year, my working life came to a definite end and my retirement began. What I couldn't imagine years ago turned out to be a "stroke of luck" in retrospect. I don't know anyone who was lucky enough to be able to spend this much time with their child and be so actively involved in their development.

When we received the diagnosis, our doctor advised us to implement all of our plans as soon as possible. That is why we decided, according to our possibilities, to go on one or two large trips per year. With the birth of Melissa, we adjusted our travel activities because we wanted Melissa with us as much as possible.

For two planned cruises, we were able to take Melissa on vacation with my sister and my in-laws. At the age of 20 months we dared our first flight with Melissa, which took us to Indonesia. Since I already needed a little more support, Daniela's sister accompanied us to relieve us with Melissa.

Since this long flight with Melissa went without a hitch, we decided to visit her second godmother in Australia at the end of 2017. The first part of the trip, the three of us were traveling by car in the Perth area. Then we flew to Sydney to celebrate Christmas and New Years with our good friends.

The following year we knew that Melissa had inherited the travel bug from us. This year's vacation first took us on a four-week road trip through California including a hand wheelchair in our luggage. One of our Assistants accompanied us to support us.

For Melissa's third birthday we were on a Mediterranean cruise with Daniela's sister and her family.

In 2019 we spent our holidays in Cyprus, with the electric wheelchair in our luggage for the first time. The transport went almost smoothly and the relief for Daniela on site, not having to push a manual wheelchair, was clearly noticeable. This time my mother-in-law was there to keep Melissa's zest for action in check.

Our last trip for the time being brought us to the Philippines first in early 2020 to visit my relatives. It was important to me, that I could introduce Melissa to her relatives. We were also supported by an Assistant on this trip.
Afterwards Daniela, Melissa and I flew to Thailand to enjoy a beach holiday together before we got home and were banned from the coronavirus in quarantine.

Since 2017 we have become aware that an Assistant is necessary to ensure relaxed travel. With implemantation of the Assistance model, we had to learn that Assistants often represent an extended family member. Neading support when traveling, brought us to a new dimension, because on one hand we are together with a Assistant around the clock and on the other hand we have to bear the travel expenses for the Assistants.

Luckily we had done this trip to Asia with Melissa, because in the next few weeks and months our life, like that of many others on the planet, was shaped by the specter of SARS Covid 19.

For us, this meant 3-4 months of quarantine or isolation. The support provided by the care givers was limited to shopping and working via video conference. For Daniela and Melissa in particular, it was a drastic situation not being able to maintain contact with friends and family only via telephone and video.

Ever since Melissa discovered her mobility, she knew how to use it extensively. It's nice for us to have an active child, but it also means a certain challenge for us parents. This task became increasingly exhausting for Daniela. The quarantine exacerbated the situation and minor tensions that were there before were piling up and building. This also resulted in increasing tensions between Daniela and me.

This year's summer 2020 showed its good side here in Switzerland. Despite Corona - now declared a pandemic - we were able to enjoy the local sun and warmth as a threesome, because the long summer holidays in Italy could not start.

The first big milestone came for Melissa. When school started, after the summer holidays, it was time for Melissa to integrate into the school system by attending the “small” kindergarten. She went the first day full of pride and the joy of kindergarten did not diminish.

A positive highlight reached us in November. We were asked by SRF if we would be interested in taking part in a report that shows the disease and our family in a positive environment. After a conversation, which showed the details of the report, we agreed to the project.

In the same month, a personal highlight was added. My homepage went online.

2020 was coming to an end and was and still is very much shaped by Corona. Despite some loosening in between, it was a challenging year for us as a family.

It was something special for me, as the the restrictions of the pandemic pushed my circumstances with the illness into the background and were less present. Many activities could not be implemented due to Corona.

The new year started with new projects. I have dedicated myself to the topic of Smart Home to give me additional independence as long as the voice is still understandable enough. This enabled me to use the Google Assistant to control the light in various rooms, make limited calls, and listen to music and the radio.

Melissa expanded her athletic activities by attending gymnastics and polysports.

As is often the case in families with children in winter, a small virus that has been introduced spreads quickly within the family. In principle, this is not so tragic, but with the current situation, the Corona warning bells are ringing. But this time all was clear and the test results were negative.

The shooting of the “Reporter” begins with great excitement. Due to Corona, some things have to be rearranged due to restrictions, which is why the focus is on outdoor activities.

The new electric wheelchair is also gradually being made fully operational.

There has been a change among the assistant, which means that the rounds of job interviews are starting again.

At the end of the first quarter 2021, Daniela will begin an 8-12 week hospital stay to recover and recharge. At the same time, the 4-week stay at REHAB Basel starts for me and Melissa can stay with friends during this time.

When I return home, the two of us - me and Melissa - live alone at home, with the support of family, assistants and friends. The planning represents a first challenge and the outcome was uncertain due to a lack of experience. Would Melissa and I get along since we didn't have 24/7 care? But we turned out to be a good team and my possibilities were still greater than many expected.

Due to Corona, the volleyball championship was suspended and training was not allowed. At the end of April, the restrictions were relaxed and training could be resumed, provided the protective measures were in place. In this context, Melissa also started volleyball training at BTV.

At the end of May Daniela came back from her time off and enjoyed a few days in Italy together with her sister and Melissa.

With increasingly pleasant weather and the onset of summer, we as a family also undertake one or the other trip with bikes and electric wheelchair. This summer we can start our holidays in Italy again after the obligatory rapid corona test has been carried out and turned out negative. Even after returning from Italy, further excursions and holidays within Switzerland followed. In this way, the trips and vacations missed due to Corona can be at least partially compensated for or made up for.

As autumn 2021 is just around the corner, the communication part of the new electric wheelchair could "finally" be completed. This year was also dominated by the topic of Corona and delivery bottlenecks and backlogged work during the lockdown were noticeable in many areas.

Thank God the volleyball championship was able to start as planned, but with the observance of various precautionary measures. We did very well in the preliminary round and remained undefeated until the Christmas break.

The possibility of visiting restaurants under more or less normal circumstances also motivated us to take advantage of this.

This meant that one or the other small activity could still be enjoyed until the end of the year, even if the protective masks were a mandatory accompaniment here and there. The Christmas visit from Daniela's sister from Germany could also take place this year without any specifications, which made everyone happy.

All in all, 2021 was a year without much activity. On the one hand, the safety requirements due to Corona had a dampening effect, on the other hand, Daniela's stay in the clinic did not end the issue of everyday stress. At the beginning of 2018 we hired the first assistant and then steadily expanded the team. At the beginning with the clear task of covering my needs. From the end of 2018 we started with a small amount of assistance for household support. This then developed continuously until it took over a large part of the household tasks. Daniela had been on sick leave at work since the beginning of 2021 and our team of assistants grew to 4 people on 5 days, as well as 3 assignments by the Spitex.

Unfortunately, this support could not reduce the burden perceived by Daniela. The tensions within our threesome built up and flattened out again and again and this at ever shorter intervals. (On the contrary, the tension in her and accordingly also within our threesome increased at ever shorter intervals). Last year we brought in a therapist to support Daniela. After the stay in the clinic, there was additional support from HotA (educational and family counseling) and we consulted a couples therapist. At the therapists' recommendation, Melissa began art therapy specializing in children to provide Melissa with appropriate but informal support. This year was also characterized by the fact that more people gained insight into and moved into our family life.

At the beginning of 2022 Corona caught up with us and Daniela and Melissa had to accept the associated restrictions. I was spared despite intensive contact.

Almost two weeks later, Melissa caught a regular flu and had to stay in bed during the first week of vacation. It should not be the last time that the topic of health accompanied us, on the contrary, it should not leave our side throughout the year.

Shortly thereafter, the first quarterly examination at REHAB Basel was scheduled, which in turn confirmed the previous very slow progress. As an exception, my specialist was replaced by another doctor. As it turned out later, she was in poor health until my quarterly check-up later this year.