We lived in the north of Amsterdam, where Jeroen was born 26 years ago. Even before he was born, he already moved around a lot in the womb of my wife. So we knew we would have a little rascal as a son, even before he arrived in this world. When he was young we moved to Lelystad, because of my work. There he had all the space he wanted to play and roam around. He studied well. He was maybe a bit naughty, but he had a sweet side as well. So when he got into trouble with teachers, they would always let him get off the hook.
When he was 15 he got diagnosed with Pfeiffer. That was when the trouble started for him. He felt tired and in pain and would always look forward to the next event to be happy, to Christmas, to his birthday. But always felt disappointed; he felt so bad he could never really enjoy the moment. He did not express those feelings, perhaps because he did not want to burden us. Before getting Pfeiffer his character was different. He became depressed and kept searching to figure out what was wrong with him.
In the end he knew more about this own health than the doctors did, and they didn’t really appreciate that. He found out himself that it he had Lyme, and that he became infected at the age 15.
The neurologist finally confirmed he indeed had Lyme when was 19 years old, after having visited some thirty others specialists. They had all given him wrong diagnoses. Sometimes I went with him. We also went to a Medical Doctor, who privately sold us supplements. He was a real quack, living in a big house of the money that we hardly could afford to pay him for things that did not help Jeroen at all.
By then his brother was already born. He too became ill and was diagnosed with a muscle disease. Jeroen did finish his education in hotel management and went to London in his exam year. It was too hard for him. He was in too much pain, always tired and homesick. He came back home, but we didn’t understand each other anymore. Lyme was not known back then. Now I do regret not putting more effort into trying to understand it better, but then it felt like he was seeing ghosts. He moved out of our house and got to his own apartment. Looking back that was when he started to go downhill fast.
He traveled to Australia, back packing, but later I heard he had so much pain he could hardly work there picking tomatoes to cover his expenses. He did not look ill however. When you saw him you never noticed anything was wrong with him. Look at his picture; he did not look all at all, does he?
We did not understand it ourselves. I also wondered what he was doing and if he didn’t drive himself crazy by looking on Internet all the time to find out what he could do to become healthy again. Now I understand why he blamed the doctors and me for not taking him seriously.
He did find a treatment. It cost 1500 euro, which we could pay – but only just. He improved slightly and kept searching. In 2012 he found the treatment protocol of professor De Meirleir in Belgium, which cost 15.000 euro and the Augsburg program with about the same price. He was disappointed that we could not assemble the money. He lived mostly at night and started sending nightly mails for help to me. I tried to explain why I could not help him. He did not accept that, left home and a week later he jumped off a cliff on the coast of France.
A few days before his death he called me. We traced his call and begged him to come back. Now we know what he was planning to do. He even called his mother to tell her it was hard to continue his plan. I could not go there because of my work, but we were very worried what was going on. Every day no news came, we had more hope that he would get home after all.
When the Police came to our house, they just said ‘condolences’, while I did not even understand what they came for. “Oh, you did not know? Your son died in France.” It was awful. My wife and I needed each other badly to get through this experience. I felt guilty for a while, but that is gone now.
Now I’m reaching out to news, the broadcasting agencies and the national politics. At least now finally they start reacting. What makes me sad and angry is that now they do respond, when they never did while he was alive and tried as well.
What I can do now is finish his story. I do not think he could have ever really recovered from Lyme. He was too ill. But he could not finish his mission to get real attention for this horrible disease. I can finish that mission for him. I hope nobody else will need to die before our government and the medical establishment finally wakes up.