Dear all, when Stefan messaged us on Instagram, this is what he said: „Hello, I’m David’s dad. He’s battling a brain tumour. Perhaps you could share his story. <3“ And of course, we immediately asked him what his family is going through right now. What the diagnosis of „malignant brain tumour“ has changed for them.
David was born with neurofibromatosis type 1. He laughs, plays, argues with his brother and debates why he absolutely wants to stay up even later. When you see him, you’d hardly believe what he goes through every day. His daily life consists of operations, radiotherapy, chemotherapy, countless consultations with doctors, new findings, flickering hopes – and sometimes also great fears.
David has already undergone two operations and two courses of radiotherapy. Despite all the treatment, the tumour remains active. But giving up is not an option for his family. Whilst David tries simply to be a child, his parents continue to fight for his future every day behind the scenes. They are in contact with international doctors and research teams, have David’s tumour tissue examined and are trying to find new treatment approaches.
They have to fund many of the additional treatments, examinations and international second opinions themselves. The travel costs too. Nevertheless, they do all this to give their David every possible chance. They continue to fight tirelessly and have now also launched a fundraiser to help cover the enormous costs. His dad Stefan is currently looking after him full-time.
Dear Stefan, could you briefly introduce your family – who’s in it, and how old are you all?
Our family consists of my wife Sandra, our two sons Ben and David, and me. Ben is 14 years old and David’s big brother; David is 12. The two of them have a very special bond – Ben looks after his little brother incredibly well. Our two dogs, Maya and Jack, are also part of our family. They are an important part of everyday life for all of us and always bring little moments of joy, even in difficult times.
When you became a father, what was your idea of family?
When I became a father, I imagined a completely normal family life. Outings together, school, friends, perhaps the odd argument over homework – all those little things that are part of everyday life. I could never have imagined that our lives would one day be so dominated by hospital visits and treatments.
Up to what point did you have the family life you’d imagined?
Actually until August 2024. Until then, despite David’s diagnosis, we had neurofibromatosis type 1 a relatively normal family life. The genetic defect had already been identified when David was still a toddler, so we always knew we had to remain vigilant. Nevertheless, for many years our everyday life was characterised by perfectly normal things – school, friends, family and moments spent together. Of course, the NF1 diagnosis was always there in the background to some extent, but David was able to lead a completely normal life for a long time. It was only in August 2024 that our lives suddenly changed dramatically.
When did you first notice (and how) that something was wrong with David’s health?
At the start of 2024, we realised that something was wrong. David kept suffering from severe nausea in the mornings and often had to vomit. On top of that, he had frequent headaches. As parents, you eventually realise that something is different from usual. We couldn’t shake that feeling.
We went to various doctors and clinics to find out what was causing it. But at first, nobody could find anything or really explain to us why David was feeling so unwell. This period was very stressful for us because we sensed that something was wrong with our son, but for a long time we didn’t get a clear answer.
Tell us about David – what makes him laugh, what does he love, how would you describe his character?
David loves the things that many boys his age love. He enjoys playing football, gaming and spending time with friends. At the same time, he has another great passion: he absolutely loves cooking. He enjoys trying out new things and preparing food for others.
In terms of his character, David is an incredibly loving and sensitive boy. At the same time, he has a strength that impresses us every day. He loves to laugh, has a great sense of humour and manages to make others smile even in difficult situations. That is exactly what makes him so special to us.
“Malignant brain tumour”, they said at some point. When did the day of the diagnosis come, and how did it affect you?
In August 2024, the diagnosis finally came: David has a brain tumour, measuring approximately 5 x 4.8 centimetres. That moment completely knocked the wind out of us. From one second to the next, everything changed. You hear the doctors’ words, but at the same time it feels as though the world around you has come to a standstill. In that moment, all you can think about is your child and how you can help them. It is a mixture of fear, shock and, at the same time, a strong desire to do everything possible to give David a chance.
Now you’re incredibly committed to contacting specialists from all over the world to see if there’s any way you can help David – are you still able to go to work, or when do you do that?
When a recurrence was diagnosed in January, we both stayed at home full-time for the time being. During that time, everything revolved solely around finding a way to help David. We spent nights on end researching online, reading studies and trying to get in touch with doctors and specialists from various countries. As conventional medicine couldn’t offer us any further treatment options at the moment, we didn’t want to leave any stone unturned.
My wife has recently gone back to work, whilst I stay with David. I take him to his doctor’s appointments, organise tests and try to structure our daily routine as best I can. And at night, when things quieten down, we continue to research possible treatments and new approaches.
Some families describe it as being like a seesaw: sometimes one of us is doing well whilst the other can’t cope anymore, and sometimes it’s the other way round. Is that how it is for you too?
Yes, that actually sums it up quite well. There are days when one of us is stronger and supports the other. This situation often pushes us to our emotional limits. My wife is usually the stronger of the two of us. She always manages to keep hope alive and look ahead, even when it’s hard. We try to support each other and remind ourselves that we’re on this journey together. Ultimately, we’re there for one another as a family – and that gives us strength.
What else helps you?
What helps us most at the moment is David’s incredible strength and courage. Right from the start, he has shown us time and again just how strong he is. In fact, he hasn’t shown any fear at all since day one. Of course, a lot of it is exhausting and stressful for him, but he faces everything with a calmness and bravery that never ceases to impress us. This strength gives us strength too. When we see how David handles everything, we know that we must keep fighting just as hard.
Tell us about the last touching moment you experienced in hospital or outside.
A very moving moment came after an MRI scan, the results of which were unfortunately not good. For us as parents, this was naturally very difficult to come to terms with. At that moment, it was actually David who comforted us. It just shows how incredibly strong he is.
A completely different, but equally touching moment was recently when we went to watch a match at SC Freiburg’s stadium at the weekend. Seeing that sparkle in David’s eyes, that pure joy – that was something very special for us. For a moment, everything else was simply forgotten and he could just be a boy who loves football.
If you were to look tentatively into the near future, what would you wish for yourself and for you all?
Our greatest wish is that we can bring this monster in David’s head to a standstill. That we find a way to stop it from growing any further and give David the chance to simply live.
We wish for him a future filled with many wonderful moments – full of love, joy and all the things that are part of a normal life. That he can laugh, pursue his interests and simply live the life that a 12-year-old boy deserves.
