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Mya was altijd een vrolijk, lief en actief meisje. Al vroeg in de ochtend was ze gezellig aan het babbelen. Het signaal dat de dag kon beginnen. Eerst knuffelen bij papa en mama in bed, daarna spelen – haar grootste plezier.

Mya werd slechts 9 maanden oud. Op 1 september 2023 overleed ze aan meningitis. Haar moeder Mabel vertelt wat er gebeurde.

Op 20 augustus 2023 had Mya voor het eerst bij opa en oma geslapen. We haalden haar de volgende ochtend vroeg op, want we konden haar niet lang missen. Die middag kreeg ze opnieuw een breath-holding-spell, iets wat we al eerder hadden meegemaakt. Daarna was ze erg moe. In de dagen die volgden merkten we dat haar gedrag veranderde.

Ze bleef hangerig, kreeg regelmatig koorts en sliep veel. Op de opvang en bij opa en oma viel op dat ze zich niet lekker voelde. De huisarts adviseerde ons af te wachten en dacht onder andere aan een mogelijke blaasontsteking. Omdat Mya goed reageerde op paracetamol, leek het soms alsof het beter ging, maar de klachten bleven terugkomen.

In het weekend van 26 en 27 augustus bleef de koorts aanhouden. Ze at slecht en moest voor het eerst overgeven. We bezochten de huisartsenpost, maar ook daar werd geen duidelijke oorzaak gevonden. Het advies bleef om haar goed in de gaten te houden.

Op dinsdag 29 augustus maakte ik me grote zorgen. Mya had opnieuw hoge koorts en was inmiddels al ruim een week ziek. Bij de huisarts kregen we antibiotica mee, maar eerst moest urine worden opgevangen om een blaasontsteking uit te sluiten. Dat lukte niet, omdat ze nauwelijks dronk en niet plaste.

Diezelfde middag ging ze plotseling hard achteruit. Ze werd steeds zieker en gaf veel over. Toen we opnieuw hulp zochten, zag de huisarts direct dat het ernstig was. Mya werd met spoed naar het ziekenhuis gebracht en opgenomen op de kinderafdeling.

Als ouders voelden we ons machteloos. Ondanks alle onderzoeken werd Mya steeds zieker. Die nacht kreeg ze epileptische aanvallen. Uiteindelijk werd besloten haar over te plaatsen naar het Radboudumc. Die overplaatsing kwam echter te laat. Bij aankomst op de kinder-IC was Mya al kritisch ziek.

We zijn het Radboudumc enorm dankbaar voor alles wat zij voor ons meisje hebben gedaan. Helaas konden de artsen haar niet redden van de genadeloze ziekte pneumokokkenmeningitis. Een MRI liet zien dat haar hersenen onherstelbaar beschadigd waren.

Op 1 september 2023 om 15.13 uur is onze mooie, vrolijke Mya overleden, in onze armen.

Na het overlijden van onze dochter Mya Louise Mar Heijckmann ontstond bij ons al snel de behoefte om iets te doen. Iets voor onze prachtige dochter, maar ook iets voor andere kinderen. Mya was een sociaal meisje dat graag speelde met andere kindjes en altijd verbinding zocht.

Vanuit die gedachte ontstond het idee voor MYAngel. Aan de hand van Mya’s uiterlijke kenmerken hebben wij een knuffeltje laten ontwerpen, zodat haar liefde, warmte en vrolijkheid op een bijzondere manier kunnen voortleven. MYAngel is Mya als beschermengeltje voor kinderen: lief, vrolijk, sociaal en troostend. Precies zoals zij was.

Met MYAngel willen wij niet alleen de herinnering aan Mya levend houden, maar ook bijdragen aan een toekomst waarin minder kinderen en gezinnen getroffen worden door meningitis. Deze ziekte kan iedereen overkomen. Daarom vinden wij het belangrijk dat er blijvend onderzoek wordt gedaan naar de preventie, herkenning en behandeling ervan.

Steun aan ItsME – bestel een knuffel
De volledige winst uit de verkoop van MYAngel wordt gedoneerd aan Stichting ItsME. Op deze manier hopen wij als ouders, uit naam van Mya, een bijdrage te leveren aan meer onderzoek, meer bewustwording en uiteindelijk minder verdriet voor andere gezinnen.

On onze website lees je meer over onze persoonlijke betrokkenheid bij Stichting ItsME, over de betekenis achter de knuffel MyAngel, de steun die hiermee wordt geboden en hoe je de knuffel kunt bestellen.

One Saturday in November 2023, I woke up from the alarm clock set by my partner, Simone. Since I was surprised that the alarm went off, I asked her why. “It’s Saturday, after all; I just have to work at my wine shop.” Pleasantly surprised, I said, “Wow, a wine shop—how nice.”

Simone thought my reaction was pretty strange because she’d actually owned that wine shop for 13 years by then. So, she checked again: “Do you know that you proposed to me?” Once again, I was pleasantly surprised: “No, but that’s so nice!”

You couldn't tell by looking at me. I finished my studies, I have a great job, and I'm just living a normal life. But underneath that “normal” life, I'm carrying a history that has shaped me to who I am now.

February 1, 2012
I was 14. I had just been diagnosed with MCTD—an autoimmune disease—when my body decided to go one step further.

That day, I was unusually cold. I had trouble walking, and my hands were shaking. When we got home from a birthday party, I walked straight upstairs without saying a word—something I normally never did. My mom was suspicious. And thankfully so. When my dad called me down for dinner a little later, I didn’t respond. He found me on the floor, having a seizure.

The ambulance took me to the AMC. I spent five days in the paediatric ICU, in a coma. After extensive testing, the doctors diagnosed me with brain inflammation—encephalitis. The exact cause remained unclear, but because of my recent autoimmune diagnosis, they opted for a high dose of prednisone. It worked. Slowly, I woke up.

It took me a very long time to realize what had happened to me. From one moment to the next, my body had shut me down. That feeling—of losing total control over yourself—has never completely left me.

My first steps out of bed felt like my legs were made of spaghetti. And even so, ten days after I woke up, I celebrated my birthday at home. No one had expected that.

The Road Back
At home, I recovered slowly. Fewer classes at school, but I was determined to finish that school year. That sense of control was so important. I wanted so badly to be normal.

The recovery was tough. The prednisone made me gain weight, and my energy levels dropped. But I kept going. Until March 7, 2013. Another seizure. Back to the paediatric ICU.
This time, the doctors knew immediately what to do. After two days, I woke up—clearer than the first time, but I also knew what to expect. Prednisone again. That long road back again. I gained twenty kilos, and that was hard—not because of how I looked, but because it made it obvious that something was wrong. And I wanted so badly everything to be normal.

Still, what stands out most from that period is the sense of warmth. The kind nurses, the visitors, and my father who stayed overnight at the hospital. My parents and little sister sometimes had a harder time than I did during that period—they thought I might not survive. While I had only one thing on my mind: moving forward.

Moving Forward
After the second brain infection, I went back to school. I split my senior year of high school over two years, studied at Eindhoven University of Technology, and completed my Master’s degree in 2023. That felt fantastic - proof that I could do it, although it took blood, sweat, and tears.

My parents often said that it was okay to take a step back. But taking a step back felt like losing control—and control was exactly what I needed.

Now
I’m 29. It’s been fourteen years. The time before and after are almost equal in length.
I live a life I’m proud of. I have a job as a construction consultant, where I finally don’t have to walk on eggshells anymore. Where I perform well without it taking everything out of me.

But I still feel the consequences. My energy levels are consistently lower than they were before that first day of February in 2012. And lately, even lower than in the years before that. I’m hyper-alert to what my body is telling me—that will probably always be the case.

For years, I refused to dwell on what really happened. Through the ItsME Foundation, I found a place where I was allowed to do just that. At the dinner at the Pillows Hotel in 2025, it felt as if a floodgate had opened. And as a coach at the Bondgenotendag 2026, I was able to give something back—to others walking the same path.

Encephalitis has broken me and built me up at the same time. It has given me a close bond with my family, great determination and the knowledge that I can handle difficult things.

It has made me into who I am today.

What started with mild flu symptoms, ended in hospitalisation on the intensive care unit in Cape Town, where Raymond fell into a coma and died only 10 days later

Raymond was 56 years old, Nicole’s partner and father of daughters Meike and Kimberly. Together they were looking forward to their last ‘family holiday’ now that the daughters were becoming too old to go on holiday with their parents. A wonderful tour in South Africa. 

Kimberly tells how her father Raymond was suddenly pulled out of life by meningitis.

Annemieke Ursinus tells the story of her husband Leon

It started in March 2004. Leon had severe headaches, so bad that he couldn’t tolerate daylight. All the curtains were kept closed. The GP saw nothing alarming: “Just take some paracetamol. ” But it only got worse. Within a few weeks, he was taking 8 paracetamol a day.

One day, I came home from work at lunchtime to pick up my car. Our five-month-old son Sam was upstairs crying hysterically. I ran to his room and found him alone in his crib, wearing only a diaper. When I came downstairs, I saw Leon lying on the couch. He was babbling incoherently, didn’t know his own name, didn’t know mine, and didn’t even know how our baby had gotten into bed. I could tell something was seriously wrong.

What on earth is happening to me? Heavily pregnant and struck down by encephalitis.

It was 2009, and I was 37 weeks pregnant with my second child. I had a headache; the pain grew worse by the day, and I began to feel worse and worse. We thought it was just a mild flu. When I developed a high fever, we went to the GP. Normally we don’t rush to the GP, but I was pregnant. The GP advised us to wait and see. A day later, I suddenly got up in the middle of the night to take a shower. During the day, my in-laws were with me to babysit our 2.5-year-old daughter and told my husband that I sometimes got a little disoriented in the house. My husband came home, saw me trying to send a text message on my phone, and noticed that I couldn’t manage it. My mother and sister had spoken to me on the phone and thought I sounded a bit flat. When I then developed a fever again and started talking incoherently, the whole circus started. At the hospital, they did a scan, a lumbar puncture, and blood tests. The neurologist suspected a brain haemorrhage or herpes encephalitis. It turned out to be encephalitis caused by the Herpes Simplex Virus. It completely turned my life—and that of my family—upside down.

I was just under 17 when my life suddenly changed. I started stuttering, stumbling over my words. More and more often, I couldn’t remember what I wanted to say, or how to say it. Simple things became confusing. I tried to screw a cap onto a bottle, even though there was already a cap on it. It felt as though my head was getting fuller and fuller, but at the same time I couldn’t tolerate any stimuli. Sleeping a lot, forgetting everything, blaming others in particular, which led to a lot of arguments, including with friends. I made a mess of my food a lot, and my day-night rhythm was turned upside down. Everything was a struggle. I was constantly tired.

The GP thought it was stress. The advice was to take some time off. But that didn’t help. Even in the quietest moments, I couldn’t speak anymore. My mum took me off school, hoping that rest would help. But it got worse.

Annelotte, aged 24 and Nicolette’s second child, used to say she would never grow old. Sadly, that turned out to be true. She will always be 24. Did she know it without realising?

In early August 2023, Annelotte had a sore throat. That infection resolved after a week. But a day later, she developed a sinus infection. That proved more persistent. The headaches it caused meant she could no longer sleep while lying down. She slept half-sitting up in bed. Not only did she have severe headaches, but she also vomited from time to time.

Nicolette tells Annelotte’s story to warn people and make them alert:

On 5 January 2023, Ingeborg and Bert lost their dear daughter Luka. She died at the age of just 21 from the effects of bacterial meningitis caused by meningococcal B bacteria.

Luka was a warm, committed and social young woman. She had a special talent for putting other people at ease, always finding the right words and touching people deeply with her sincere attention and empathy. Her presence made a real difference in the lives of so many people.

The death of Luka has caused an immeasurable grief. Thanks to great support and sympathy after her death, Ingeborg and Bert slowly found a way to cope with such intense loss. Her memory continues to live on in the hearts of all who knew her.