Do you remember that endless heatwave? Neither do we, really. Because for the past few days, something strange has been falling from the sky. Wet, cold, and dripping. We had to think hard about what that stuff was called again until it finally hit us: it's rain. And when the heavens insist so persistently on keeping you indoors, you might as well grab a blanket, pour yourself something warm, and settle down with a good blog post. As luck would have it, we have one ready for you, with an update on our remarkable daughter.
In our last blog, we shared the news that Ella-Marie had started having seizures again. The response was overwhelming. Cards, messages, candles. And still, week after week, we keep hearing the same heartfelt question: "How is Ella-Marie doing?".
So we're opening the blog book once more. Get comfortable, because there's a lot to tell. And this time, very cautiously, we'll end with a small glimmer of hope.As always, we love hearing from you, so feel free to leave a comment or message.
Stable... For now
Let's start with the good news, because there is some. With the right medication, Ella-Marie is currently stable.
That said, we still don't dare say the word "hope" too loudly. Ella-Marie used to be medication-resistant, which means we simply don't know how long this period of calm will last. After surgery, it can happen that medication suddenly starts working exactly as it should. But certainty? We don't have that. Maybe we never will. And that's something we're slowly learning to live with.
The week we were back at square one
The first week of June felt like a return to the very beginning. A full week in the hospital at UZ Leuven. A search for the seizures that simply refused to disappear. Uncertainty, sadness, and helplessness took over.
Five days connected to a continuous EEG monitor. Waiting, watching, hoping in the strangest way imaginable for a parent: hoping that a seizure would happen so the doctors could see what they needed to see. During two "useful" seizures, a radioactive tracer was injected with one goal in mind. The MRI needed to pinpoint exactly where the seizures were starting.
Why "The Right Side" changes everything
And that's where everything hinges, dear reader. Forgive us for no longer speaking about hope, but rather about the best possible outcome among several difficult scenarios.
A little background is important here. Several years ago, the right hemisphere of Ella-Marie's brain was disconnected from the rest of her brain. That was entirely intentional. The seizures originated there, and the affected hemisphere was deliberately separated from the healthy left side. The most favorable scenario now is that the seizures are once again starting on the right side, in the same area they came from before. That would mean that a small connection between the damaged right hemisphere and the left side has remained intact. And a connection like that can potentially be surgically severed. That gives us a path forward.
It would be far more problematic if the seizures originated in the left hemisphere, the side that has always been considered healthy. Ella-Marie depends on that side for almost everything. It's not an area that can simply be operated on.
And then, while we were still writing this blog, the news we'd been waiting for arrived. The test results point to the right side. Exactly the scenario we had secretly hoped for. We're not celebrating yet, but for the first time in a long while, the future feels a little less like a closed door.
And who patiently worked through all of this once again? Professor Katrien Jansen. We've written it before, and we'll keep saying it. You can literally see Ella-Marie relax when she walks into the room. With her calm explanations, always speaking directly to Ella-Marie herself, she brings a little bit of light every time. And sometimes, perhaps, even a little hope.
A Teenager... With a Capital T
Ella-Marie has grown in every sense of the word. We regularly get to enjoy her sharp sense of humor, her witty observations, and that smile that can brighten an entire room.
And, truth be told, we just as often get to experience her full-blown teenage outbursts. Because let's be honest: being a teenager is challenging for everyone. Testing boundaries. Doors closing just a little too enthusiastically. Feeling like the whole world doesn't understand you. Most teenagers go through that with two fully functioning hands and two fully functioning legs. Add a disability. Add a body that doesn't always cooperate. Then you can imagine how much greater the frustration can be. The fact that she keeps fighting her way through it all, with setbacks, successes, and the occasional earth-shattering sigh, only makes us prouder of her (and occasionally leaves us wonderfully frustrated too :-) ).
Looking ahead to the next school year
School has been going really well. Ella-Marie will move on to the next academic year in the Logistics program. But we'd be doing ourselves a disservice if we weren't completely honest: it won't be easy.
Cooking with one hand is possible. Moving a large cooking pot isn't. Taking care of a baby with one hand is possible. Carrying that same baby safely is another story. Playing bingo with residents in a care home will be absolutely fine. Pushing those same residents around in a wheelchair will be a challenge in itself (although we've already practiced that quite a bit at the Efteling! :-) ).
Thankfully, IMG is willing to work with us and develop an adapted program. And us? We are going to do absolutely everything in our power to help Ella-Marie succeed.
Because...
She Is Happy. Truly Happy.
She is genuinely happy at school. Her teachers put in an incredible amount of effort. She has real friends. And above all, she feels safe there.
Anyone who followed our updates last year knows just how enormous that contrast is. Her best friend even comes over regularly and stays the night with us. The pure, carefree joy that shines from her face during those moments is exactly what makes everything worthwhile.
And Olivia?
Olivia is doing wonderfully. We probably don't say it often enough, but growing up as the sibling of someone with significant medical challenges isn't always easy. Yet Olivia is finding her own path, with a healthy dose of confidence and plenty of intelligence.
For the first time, we completely let go during her exam period. The result? An average score of 90%. There really isn't much negative to say about that. Alongside gymnastics, aspiring makeup artistry, and babysitting, she's also learning to enjoy something equally important: peace and quiet in her own room. And we completely understand that, because one thing is becoming painfully clear: Soon we'll have two teenagers in the house.
Pray for us. :-)
And us, as parents?
It's not always easy. That much should be obvious. We each deal with it in our own way.
Mom hugs. A lot. She practically keeps the entire household running on her own whenever Dad is off working abroad again. On top of that, she still works almost full-time. Thankfully, Grandma, Bonus Grandma, and Omi are always there to help. Even so, Annelies is an incredibly strong woman. And that's putting it mildly.
As for your humble writer? He works himself to exhaustion. The first half of 2026 was full of frequent flyer miles. San Francisco, Poland, Romania, Germany, and Egypt have already been on the schedule. And in his spare time, he walks. A lot.
Because walking creates space. Space in the mind. Room to breathe. Room for ideas. Room for endless searches for epilepsy solutions and for anything that might help, somewhere, somehow.
Those walks started thanks to Demi, our dog, who needs her daily exercise. But they also came from the realization that I actually can walk. When you're confronted with disability every day, you learn to appreciate even more the abilities you still have. That's why, on September 4, I'll be taking part in the Hageland 101+6 km challenge. We'll try to walk the entire route within 25 hours. For myself. But also for Ella-Marie.
Many of you have already seen the fundraiser for the Epilepsy League. To everyone who has sponsored me: thank you.
Hagelandse 101+6 tegen epilepsie - Epilepsie Liga | WeGlow
I can only say THANK YOU. I'll do everything in my power to reach that finish line.
The Hotel Problematic Project (Patent Pending)
And somewhere, during one of those countless walks, I came up with a brilliant idea. But please don't take it too seriously. :-)
Three Belgians have already won the EuroMillions jackpot this year. So, after careful consideration, I have decided that I'll be the fourth.
In a few months, we'll have €100 million. With that money, we'll buy a large piece of land, and on that land we'll build:
- A hotel with a restaurant, where young adults with disabilities can actively participate. Cut your first onion? Certificate and a big celebration with your parents. Successfully clean and prepare a room on your own? Enjoy a complimentary overnight stay in that very room!
- Small supported-living homes, where those same young adults can live independently with access to the right support, including physiotherapy, speech therapy, and everything else they may need.
- A petting farm, where they can help care for the animals while families and schools come to visit. And yes, there will be certificates everywhere, because every achievement deserves to be celebrated.
The name of the project? Hotel Problematic. :-) Feel free to laugh. Dreaming is allowed too.
And who knows? Maybe Marc Coucke, Elon Musk, or Jeff Bezos are reading along.
What Comes Next for Ella-Marie?
The past few months have mostly been a waiting game. Waiting for the June test results. Waiting for discussions between the hospitals in Leuven and Utrecht. The internal review in Leuven has now taken place. And we have an answer. That answer gives us cautious encouragement. The seizures are indeed originating from the right side. That means there may be a plan moving forward. Ideally, the medication continues to do its job perfectly and no further intervention is needed.
If that doesn't happen, surgery remains an option to sever the final problematic connection between the two hemispheres. And if that doesn't solve things either, we'll keep looking. And, as always, we'll keep believing in science.
It isn't easy. It never has been, and perhaps it never will be entirely. But we have each other. The four of us, and the dog. One step at a time. Sometimes shaky, sometimes taking giant leaps, but always together.
In the meantime, hold your own loved ones a little closer and tell them that you love them.
Enjoy the small things and the big things, with or without the rain.
And as always, we'd love to hear from you.
Until next time.