December 18th, 2025, around 4:30 PM, the work laptop was shut down for the last time that year. A four‑hour commute home lay ahead. Chris Rea had already summed up the goal of the next few hours: "Driving home for Christmas." The last bit of daylight disappeared (God, how quickly it gets dark these days), and the Christmas lights seemed to flicker just a little brighter than usual. Finally, more time for family. Finally, time for the things that truly matter.
During the drive to picturesque Heist‑op‑den‑Berg, the movie of the year played in my mind several times, and certainly not in chronological order. Because although many things crossed our path, one event stood out above all others this year. It may be coincidence, but in recent weeks we've been asked more and more how Ella‑Marie is doing these days. And that's exactly why we're opening a new blog post now.
Are you okay?
On July 14th, we proudly wrote that Ella‑Marie had received her diploma. The attentive reader had already noticed that it had been anything but an easy year. The constant bullying had taken a heavy toll, and Ella‑Marie struggled to recharge her batteries.
At home, the pressure often erupted. The angry outbursts and intense crying spells stood in stark contrast to her beautiful smile and proud dance moves.
One day in late May, after yet another terrible day at school, Ella‑Marie came home in tears. We tried to comfort her with hugs and soothing words. But during her explanation, something happened that we thought we would never see again… Her nostrils flared, her left arm shot upward, and her eyes began to flutter.
Ella‑Marie?! Are you okay?!
This can't be happening.
"Yes yes, Daddy, I'm fine. I'm just a bit tired."
Call it naïve hope, emotional shutdown, or simple denial - all rationality left us, and we wanted so badly to believe her. Days passed, and with every small movement our hearts skipped a beat. Sometimes her nostrils widened, sometimes her arm twitched, but Ella‑Marie always remained fully conscious.
Days turned into weeks, but sadly the weeks did not turn into months.
It became clear that in every stressful situation, Ella‑Marie showed more and more physical decompression. In a typical teenager without medical history, you might think she had developed a nervous tic to shake off tension. But in Ella‑Marie's case, it turned out differently.
Courage
One Sunday in June, the sun was high in the sky. Twenty‑eight degrees used to be hell for Ella‑Marie - anything above twenty meant epileptic seizures were almost guaranteed. After the surgery, she can't get warm enough. She walked outside with her phone in hand and sat confidently on the black lounge chair on the terrace - a spot most people would avoid for fear of burning their behinds. Like a true teenager, she scrolled through YouTube channels. Just as we were about to tell her she might melt if she stayed there any longer, she stood up and went to her room. Not even half an hour later, she came to us and bravely began her story.
"Daddy, I hope you won't be mad, but I need to tell you something. I'm sorry, but I think something is happening in my head again, because I don't feel well sometimes. Could you please call Leuven? I think I need more tests."
And then the world stopped
So it was something. Despite all our hope, she had felt it too. A tsunami of emotions hit us: injustice, sadness, anger, and even despair. But above all - by far - a deep love and enormous respect for a not‑so‑little girl standing before us with so much courage.
"No, Ella‑Marie, please never apologize for something you cannot control."
Just like two years ago, the switch flipped instantly. Epilepsy problems? Contact Prof. Dr. Katrien Jansen. And as always, she responded quickly.
The first tests
The first EEG showed nothing alarming. The left hemisphere was functioning perfectly. The right side was still a bomb of epileptic activity, but according to the surgical report, it had been disconnected. A first relief - because after such a shock, many worst‑case scenarios had crossed our minds.
A second test was needed, but it took some time because there aren't many scanners available in Leuven. An fMRI is a type of brain scan that shows which parts of the brain are active by measuring how much oxygen the blood delivers to different areas. Active brain cells use more oxygen, so those regions light up on the scan. With great fear, Ella‑Marie entered the scanner, expecting bad news. Normally the test takes an hour, but after barely fifteen minutes the specialist came to us. The test had to be stopped - her braces caused interference.
As if Murphy had climbed onto our shoulder again, determined to delay, disrupt, or complicate everything.
The fMRI has now been completed. Leuven also contacted Utrecht, and they will discuss the situation early next year.
The most plausible explanation at this moment is the following: the original surgery appears to have been fully completed, but there may still be one small connecting fiber active in the right hemisphere. If that's the case, there are two options: medication to control it, or a small procedure to cut that last fiber. We don't expect new deficits on the left side, since Ella‑Marie learned everything again using that side after the major surgery. A more detailed fMRI will confirm the exact situation.
How is she now?
There are still regular episodes of epileptic activity, especially when things get busy or stressful. Her arm sometimes lifts, her eyes flutter, and her nostrils flare. Small signs we now recognize instantly.
The most important thing is this: Ella‑Marie always remains fully conscious. She can clearly indicate when something is happening, and there is no risk of her collapsing or injuring herself. We monitor it closely, but it doesn't stop her daily life.
Time for positivity
Thankfully, there are also truly positive things - and they warm our hearts. School is going incredibly well. Ella‑Marie is surrounded by teachers who are genuinely golden people, who not only teach but also watch over her well‑being as if it were the most natural thing in the world. The bullies are gone (different school or kept at a distance), and that alone has brought so much peace.
But the most beautiful part is how Ella‑Marie herself is blossoming. She is intrinsically motivated and wants to help at home with everything she can: cooking, setting the table, clearing up, cleaning, ironing… Tasks that aren't easy for her, but which she tackles with stubborn pride. We know not everything will be simple, and some obstacles will remain. Earning a full diploma may not be realistic. But as long as she feels good at this school, she will stay there. Another change of environment would be unfair after everything she has already endured.
And then… perhaps the most touching part of all: she finally has a truly wonderful best friend. For the first time, Christmas cards lie on the table from friends thanking her for being so kind, for always being there for others. Small cards, big meaning.
Sports, physical and mental well‑being
Ella‑Marie continues to make progress in many areas. She enjoys sports again: she loves gymnastics, and in the pool she feels completely in her element. Physically, she keeps working on her strength and movement every day, with the help of the physiotherapists at Akketuut who have supported her for so long.
And mentally? Of course she's a teenager, with all the quirks that come with it, but overall we see a girl who is much happier than a year ago. A girl who is slowly shining again.
Looking ahead... again
No, it's not easy. It never has been, and it may never be completely easy. But we have each other, and in the end, that's what matters most. With the four of us - and our sweet dog Demi - we keep moving forward, step by step, sometimes unsteady, sometimes with big leaps, but always together. And for that togetherness, we will keep fighting.
Merry Christmas and Happy New Year
The end of the year can be quite busy, with family gatherings following each other faster than your calendar can handle. And yes, sometimes you might even dread it a little. But when you take a step back, you realize how special it is that we can still see each other, sit together, and give each other a good, warm hug. It's far less obvious than we often think - and that makes it all the more precious.
We wish you a wonderful Christmas, a happy New Year, and above all: good health.
