Aurelia 17 years
The disease
We were like a solar system - Vinci was the sun and it was always about him. There were so many wonderful moments and joy with him.
He laughed so much. Vinci was just different, but for us it was normal, I think.
The dying
Vinci's death was very sudden. We had to drive to Munich in the middle of the night and I was told that Vinci was dying. He still was fine in the morning.
The time after
After his death, it was terribly empty. I thought to myself that he couldn't just be gone - he had to be somewhere. Somehow I have got used to the fact that hi is no longer here, that he will never come back.
The beautiful moments
One particularly beautiful moment was at the children's hospice in Allgäu. We put hin in a nest swing and I sat down with him. He started laughing so sweet.
The others
My friends didn't dare to talk to me about it at first because they probably didn't know what to say.
I wish people would not be afraid to talk about dying and death. It can happen to anyone. It's bad for them, but it's not bad to talk about it. It also takes away a burden when you can talk about it.
We were like a solar system - Vinci was the sun and it was always about him. There were so many wonderful moments and joy with him.
He laughed so much. Vinci was just different, but for us it was normal, I think.
The dying
Vinci's death was very sudden. We had to drive to Munich in the middle of the night and I was told that Vinci was dying. He still was fine in the morning.
The time after
After his death, it was terribly empty. I thought to myself that he couldn't just be gone - he had to be somewhere. Somehow I have got used to the fact that hi is no longer here, that he will never come back.
The beautiful moments
One particularly beautiful moment was at the children's hospice in Allgäu. We put hin in a nest swing and I sat down with him. He started laughing so sweet.
The others
My friends didn't dare to talk to me about it at first because they probably didn't know what to say.
I wish people would not be afraid to talk about dying and death. It can happen to anyone. It's bad for them, but it's not bad to talk about it. It also takes away a burden when you can talk about it.
Aurelia is just starting her training as a confectioner and is Ignaz's sister.
She was 13 years old when her brother Vinci died at the age of 7.
She was 13 years old when her brother Vinci died at the age of 7.
Excerpt from a conversation in August 2022.
The two portraits were taken in 2015 and 2022.
The two portraits were taken in 2015 and 2022.
Ignaz 14 years
The disease
I never thought about Vinci dying like that. We were just happy that he was there. We took many photos of him and
spent a lot of time with him.
The dying
He was taken away by helicopter because he didn't get enough oxygen. We were with him in the hospital when hi died.
It was sad and terrible.
The time after
Something was missing when he was no longer there. When I woke up in the morning it was different. I used to look for him
and now I went to look for him and he wasn't there anymore. I still think about him and that´s why he is still there.
The beautiful moments
Holidays were especially nice with Vinci. It was wonderful when he laughed.
The others
Many have not really gone to him and can't talk about it, can't express what they feel.
They see it all a bit too tragically.
I wish that people would stop being afraid of dying and death and use the time that one is still alive.
I never thought about Vinci dying like that. We were just happy that he was there. We took many photos of him and
spent a lot of time with him.
The dying
He was taken away by helicopter because he didn't get enough oxygen. We were with him in the hospital when hi died.
It was sad and terrible.
The time after
Something was missing when he was no longer there. When I woke up in the morning it was different. I used to look for him
and now I went to look for him and he wasn't there anymore. I still think about him and that´s why he is still there.
The beautiful moments
Holidays were especially nice with Vinci. It was wonderful when he laughed.
The others
Many have not really gone to him and can't talk about it, can't express what they feel.
They see it all a bit too tragically.
I wish that people would stop being afraid of dying and death and use the time that one is still alive.
Ignaz still goes to school and is Aurelia's brother.
He was 9 years old when his brother Vinci died at the age of 7.
He was 9 years old when his brother Vinci died at the age of 7.
Excerpt from from a conversation in August 2022
The two portraits were taken in 2015 and 2022.
The two portraits were taken in 2015 and 2022.
Maximilian 23 years
The disease
Annalena's first tumor was operated out, then came radiation and chemotherapy. We thought that she would get well again and were already full
of hope. But then came the setback. At some point my parents told me that Annalena could no longer be saved.
That it was only a matter of her not being in pain.
We could no longer play together so much, but I read to her, played cards with her and we talked to each other.
The dying
Looking back, I would almost call the dying phase beautiful, because we were able to say goodbye to her and enjoy the last time together with her.
Beautiful because we were allowed to be there when she died at home. She could die in her environment, only we as a family were there.
Beautiful sounds strange for something like that, but we really had the opportunity to say goodbye to her.
The time after
The time after Annalena's death was a void. I didn't want to admit it. The next two or three years were extremely hard for me.
With time, you learn to live with it a little bit. My life changed completely after that.
Personally, I've certainly become more mature because I know what it means to be allowed to live. That is something that others have not experienced at all.
Of course it has a high price, but it has brought me further.
The beautiful moments
When my sister was not in pain and was awake, she always liked to lay these patiencen. It was nice to see that she was then hungry and ate her two favorite dishes.
The others
During the time there were those who distanced themselves from our family because they did not know how to deal with us. On the other hand, some of them brought us food at noon because they knew we couldn't take care of it right now. They always supported us and treated us like normal people.
I wish that such two camps did not exist, they do not have to be. They are just normal people who are affected by dying and death.
Annalena's first tumor was operated out, then came radiation and chemotherapy. We thought that she would get well again and were already full
of hope. But then came the setback. At some point my parents told me that Annalena could no longer be saved.
That it was only a matter of her not being in pain.
We could no longer play together so much, but I read to her, played cards with her and we talked to each other.
The dying
Looking back, I would almost call the dying phase beautiful, because we were able to say goodbye to her and enjoy the last time together with her.
Beautiful because we were allowed to be there when she died at home. She could die in her environment, only we as a family were there.
Beautiful sounds strange for something like that, but we really had the opportunity to say goodbye to her.
The time after
The time after Annalena's death was a void. I didn't want to admit it. The next two or three years were extremely hard for me.
With time, you learn to live with it a little bit. My life changed completely after that.
Personally, I've certainly become more mature because I know what it means to be allowed to live. That is something that others have not experienced at all.
Of course it has a high price, but it has brought me further.
The beautiful moments
When my sister was not in pain and was awake, she always liked to lay these patiencen. It was nice to see that she was then hungry and ate her two favorite dishes.
The others
During the time there were those who distanced themselves from our family because they did not know how to deal with us. On the other hand, some of them brought us food at noon because they knew we couldn't take care of it right now. They always supported us and treated us like normal people.
I wish that such two camps did not exist, they do not have to be. They are just normal people who are affected by dying and death.
Maximilian is studying industrial engineering.
He was 12 years old when his sister Annalena died at the age of 9 following her illness.
He was 12 years old when his sister Annalena died at the age of 9 following her illness.
Excerpt from a conversation in August 2022.
The two portraits were taken in 2011 and 2022
The two portraits were taken in 2011 and 2022
Marius 19 years
The disease
When Anna got sick, I was four years old, so as far back as I can remember, it was reality for me because I didn't know it any other way.
I think I could realise to some extent what Anna's situation was like, but it also scared me.
The dying
I was lying in my bed in the next room. In the evening we noticed that her pulse was very irregular.
Then I was fetched and heard the beeping, which stopped again and again. I thought that was terrible.
beeping, which stopped again and again. I thought that was terrible.
The time after
The time after Anna's death was very unreal at first, because it was hard to realise that she would no longer come running
It took me hard to realise that she would no longer come running. maybe one or two years, but after that it was the norm for me.
Of course, when I think about what she would be doing now if she hadn't died, it's definitely sad.
The beautiful moments
We had a very good relationship, of course we quarrelled sometimes, but that's part of it.
The others
I think everyone was always a bit afraid to talk to me directly. People don't like to talk about it.
I wish it could already be talked about and we should not keep it quiet. The word is even ambiguous.
When Anna got sick, I was four years old, so as far back as I can remember, it was reality for me because I didn't know it any other way.
I think I could realise to some extent what Anna's situation was like, but it also scared me.
The dying
I was lying in my bed in the next room. In the evening we noticed that her pulse was very irregular.
Then I was fetched and heard the beeping, which stopped again and again. I thought that was terrible.
beeping, which stopped again and again. I thought that was terrible.
The time after
The time after Anna's death was very unreal at first, because it was hard to realise that she would no longer come running
It took me hard to realise that she would no longer come running. maybe one or two years, but after that it was the norm for me.
Of course, when I think about what she would be doing now if she hadn't died, it's definitely sad.
The beautiful moments
We had a very good relationship, of course we quarrelled sometimes, but that's part of it.
The others
I think everyone was always a bit afraid to talk to me directly. People don't like to talk about it.
I wish it could already be talked about and we should not keep it quiet. The word is even ambiguous.
Marius is studying computer science.
He was 11 years old when his sister Anna died at the age of 7.
He was 11 years old when his sister Anna died at the age of 7.
Excerpt from a conversation in March 2020.
The two portraits were created in 2012 and 2020.
The two portraits were created in 2012 and 2020.
Mila 17 years
The disease
When Felix wasn't doing so well, I prepared myself for the fact that he was going to die, that it was going to happen, because I didn't want to
be surprised by it. We couldn't communicate with words, but we could still communicate somehow.
You don't need words to communicate with each other, to like each other and have fun together.
The dying
We were sitting downstairs, everything was normal that day. Mum went upstairs because there was an alarm.
Then she called out to us that his heart had stopped.
Somehow I was already ready. Tears came to me too, but I couldn't break down.
The time after
Immediately after his death, I lay in my bed and I was afraid of what the next day would be like.
The day after, it was somehow so unreal. I thought I would wake up and everything would be normal and OK again, but it wasn't OK.
Afterwards it was so strange, because I didn't know it without Felix.
It was suddenly so quiet and still because there weren't as many people in the house as there used to be and the appliances
were no longer audible. But I didn't want to feel it, didn't want anything to weaken me, because I thought my brother wouldn't
want that either. It was difficult to cope at that time.
But then I had more attention from my parents. We could go on holiday together and had more time together.
But you always had to explain it to people you met.
The beautiful moments
I used to sit in his bed at night and we would watch the Muppet Show or The Addams Family together. Those are nice memories.
The others
My friends knew that my brother was disabled. My best friend handled it super well. She treated Felix the way I treated him.
I wish that dying and death were not treated as a taboo subject. We all know that we will die one day. Some die sooner, some later.
But we all know it.
When Felix wasn't doing so well, I prepared myself for the fact that he was going to die, that it was going to happen, because I didn't want to
be surprised by it. We couldn't communicate with words, but we could still communicate somehow.
You don't need words to communicate with each other, to like each other and have fun together.
The dying
We were sitting downstairs, everything was normal that day. Mum went upstairs because there was an alarm.
Then she called out to us that his heart had stopped.
Somehow I was already ready. Tears came to me too, but I couldn't break down.
The time after
Immediately after his death, I lay in my bed and I was afraid of what the next day would be like.
The day after, it was somehow so unreal. I thought I would wake up and everything would be normal and OK again, but it wasn't OK.
Afterwards it was so strange, because I didn't know it without Felix.
It was suddenly so quiet and still because there weren't as many people in the house as there used to be and the appliances
were no longer audible. But I didn't want to feel it, didn't want anything to weaken me, because I thought my brother wouldn't
want that either. It was difficult to cope at that time.
But then I had more attention from my parents. We could go on holiday together and had more time together.
But you always had to explain it to people you met.
The beautiful moments
I used to sit in his bed at night and we would watch the Muppet Show or The Addams Family together. Those are nice memories.
The others
My friends knew that my brother was disabled. My best friend handled it super well. She treated Felix the way I treated him.
I wish that dying and death were not treated as a taboo subject. We all know that we will die one day. Some die sooner, some later.
But we all know it.
Mila goes to media design school.
She was 12 years old when her brother Felix died at 14.
She was 12 years old when her brother Felix died at 14.
Excerpt from a conversation in August 2022.
The two portraits were taken in 2016 and 2022
The two portraits were taken in 2016 and 2022