Storytelling
I’m Malte, a husband and father of two. A completely normal guy, you could say. If it weren’t for our daughter’s serious illness.
Epilepsy is our burden. Heavy. Incurable. Frustrating. It determines every aspect of our family life. Our family is us: Mandy and Malte and our two children. A perfectly healthy and fit son, 13 (born in 2011) and our daughter, 9 (born in 2015). When our daughter was 4 months old, we received a life-changing diagnosis: a severe, very rare form of epilepsy, known as Dravet syndrome . The first few years were extreme; our daughter had seizures several times a week, and there was no reliable treatment. She was in status epilepticus several times – a life-threatening condition that can be fatal if not treated in time. But epilepsy wasn’t the only problem; the condition also includes severe cognitive delay. For months, we didn’t know if our daughter would ever be able to walk or speak. We spent weeks in the hospital, 30 days a year just for scheduled stays, plus unscheduled emergency stays. The triggers for her attacks are as trivial as they are frustrating: A body temperature of 38°C triggered the attacks – as did infections of all kinds. Every middle ear infection, every cold, every minor sniffle became a fight for survival.
But we’ve been living with this illness for years. There are good episodes and not-so-good episodes. Our family is strong, and we somehow manage everything.
We’re open about our daughter’s illness, trying to foster understanding wherever possible, and explaining how limiting such an illness can be—not just for the patients themselves, but also for their families. The stress and hassle of bureaucracy often added to our situation. But I actually see bureaucracy as a good thing, because everything has its predetermined path. Rights and responsibilities can be researched in just a few minutes using legal texts. But sometimes even that’s difficult, especially when you’re caught between two jurisdictions, like when we were on TV and in the press .
#Inclusion is nowhere near where it should be, where it actually has to be.
We certainly have hundreds of examples of situations where life with a dependent relative was made more difficult, sometimes even threatening our very existence. For example, when we desperately searched for a kindergarten place at the end of our parental leave, no facility dared to care for such a severely disabled, sick child. We were pressed for time because our parental leave was over and we didn’t have a second income – but we still had to pay the rent.
It’s all just so difficult somehow, even though it should all be so easy. But that’s what inclusion looks like in reality. The list of our examples reads long and arduous. But we’re actually doing pretty well as a family. Our daughter may be ill and severely developmentally delayed, but she’s mobile and happy, loves to play, learn and laugh. She likes to argue with her perfectly healthy big brother, who proves to us every day that we have every right to be proud of him, because he really doesn’t have it easy either, having grown up constantly worrying about his sister. If we could, we would love to take all of this off his hands.
Sometimes it’s not easy for us parents to find contentment. Sometimes we have to search for it. We find it in the little things that other people might not be aware of. In children’s laughter from the nursery. In those moments when it gets quiet upstairs and the kids are up to mischief. In a walk with the family. Or when we parents sit in our garden on a beautiful summer day, enjoying the sun with a white wine spritzer while the children and the family dog romp around outside. For many people this is normality – for us it is something special. But that is exactly what we want: normality – or at least a small piece of it. Because that is also inclusion, isn’t it? Isn’t normality a kind of synonym for inclusion?
Special moments for us parents are when we can go out together as a couple. Of course, that only works with the support of our family and someone to look after the children. Or when there is a babysitter at home. That isn’t easy either, because our babysitters need to have in-depth medical knowledge. Real professionals who know how to keep a cool head and what to do in the event of an epileptic seizure. This isn’t a job for the young teenager next door. Our free time as a family and parents is therefore very limited, but we always make the best of it. We’ve learned that normality is something special for us, and we particularly savor these moments.
The beginning of our family story reads as difficult, but it didn’t remain so bleak. Quite the opposite! While two years ago, severe epileptic (cluster) seizures dominated our lives, this is now almost history.
This was made possible by an extremely competent team of doctors, a drug trial, and, of course, a bit of luck. We are being treated at the University Medical Center Schleswig-Holstein (UKSH) and the North German Epilepsy Center in Schwentinetal/Raisdorf (DRK) . Two institutions whose achievements we would like to highlight with special attention at a later date!
The study changed everything, it was a game changer. Originally, my daughter was taking eight different medications – and her epilepsy, Dravet syndrome, still couldn’t be kept under control. Then a new medication came onto the market. Approved exclusively for the treatment of Dravet syndrome. We reduced the dosage of many other medications – so rapidly that we had to make weekly notes so we wouldn’t lose track of the current dose. Within a short time, we were down to two medications. My daughter is now so much more alert and fitter; she’s making tremendous progress in her development and at school. She no longer needs a pediatric nurse to accompany her to school, and she can even safely climb the stairs in our building unaided. Her seizure frequency is so low that we no longer know exactly when her last seizure occurred. We do know, however, that there were exactly 300 days of seizure-free time between the last two seizures. As parents, we no longer have to focus on their survival , but can now support their development as best we can. We regained a family life. Above all, we gained more precious time with our son. We even tentatively dared to take a family vacation. It was only 300km away and only for five days. But it was fantastic. It felt like normality. We’re now making bigger vacation plans and no longer have to calculate the travel time to a pediatric neurology center. Perhaps even a flight soon?
Career? Unthinkable!
... or ...
Unthinkable career!
The situation remained stable, and our lives gradually improved—although life remains somewhat challenging due to disability and caregiving. But it’s nothing like it used to be. A new opportunity even opened up that would fundamentally change our lives once again: We pursued careers. In 2024, I took over my company and became a partner and managing director of SGB IT oHG .
At the same time, my wife Mandy became managing director and partner of one of Flensburg ‘s restaurants: The Porterhouse in the Gnomenkeller . It’s still incredible to us that today—despite caregiving, illness, and bureaucracy—we are able to manage a family and combine all of this with being self-employed.
We would now like to express this drive with a somewhat crazy project: We have decided to take part in the Viking Sun Rally 2025. You can find out more information about the rally here . With this fantastic project and comprehensive reporting and media presence, we want to give hope to all families affected by illness and disability and show that a disability does not have to be an obstacle to a successful career and a happy family. We want to give hope to parents whose infants are diagnosed with Dravet and show that anything is possible, and distract from the terrible horror stories that you first find online about the disease. We are the proud parents of two children – our brave daughter and our healthy 13-year-old son, who shows us every day how beautiful and colorful life can be.
We will use this energy as Team McWell by SGB IT oHG as #Inkluenzer during the rally to create understanding: for epilepsy, care, Dravet, disability and inclusion. We hope to be able to inspire affected families never to give up. The Viking Sun Rally, our company SGB IT oHG and our sponsors are supporting us in this fantastic project and are giving us the opportunity to prove this in a very special, crazy and adventurous way and thus send a strong message to the world. We are therefore delighted that you are joining us on this journey, this adventure. Please help us increase our reach so that we can reach as many people as possible, either via this website, on Instagram or by talking about us and our project – help us spread the spark of hope into the world.
In addition to inspiring and raising awareness as #Incluenzers, we will also be conducting a crowdfunding campaign for a charitable cause of our choice. Therefore, our fundraising campaign began in mid-March 2025 , and we would like to invite you to join.
Malte and Mandy are happy to answer interview requests.
Handewitt, 6.12.2024 (Updated 2. April 2025)
