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I cannot describe it otherwise. Where we thought it would certainly last until September / October, we suddenly received a phone call from Barcelona on the day that Rosa was actually going to have surgery. Whether we dared to have the operations done in May. There were a lot of uncertainties, but if we agreed, we would quickly receive more information.

Strange times we live in

The CoVID-19 virus is spreading and unfortunately what we feared came true. On Thursday afternoon we received the message that the operations are being postponed. No surprise, I follow the news in both the Netherlands and Spain.


We have been busy for a while now getting the necessary funds for surgeries, but what exactly will the money be spend on? Let me start with a hopeful and equally disappointing statement. A date has been set for the operations at the end of April. In addition, the specified bill for the operations was presented and that was a bit of a shock. The cost tag is therefore a lot higher. I will now explain how all this is structured. Only fair if you ask people to donate that you also show where the… Read More »Costs


I’m getting more and more worried about Rosa’s and mine current health. I of course know that we are very ill, however this has been developing fairly gradual over the last few years, but then noticing how fast we’ve been degenerating over the last couple of months and how much less we are able to do every day, well that’s pretty scary confrontation. A few examples of the situation, for example, we can walk less and less, have almost no good days anymore, are no longer be able to follow simple things like a TV… Read More »Worries

Best friends

My best friends have written a blog about what they think about my sickness, their hope for the future and the crowdfunding campaign. I get so much support for my girls and I am so thankful for them and because of them I can keep going and have hope for the future. Sascha I have known Jane since kindergarten, we were both 4 years old. We always tell everyone about the first day we met, that we hated each other. And that the next day we were best friends immediately. This story isn’t entirely true,… Read More »Best friends

Looking back

The year is almost over. And what a year we have had. Finally after years of searching and constant deterioration, we know what is wrong with Jane and Rosa, apart from the diagnoses that have already been collected, and what causes them to deteriorate. And we know that a solution is possible that not only saves their lives but can also ensure that they can improve at least 50% but possibly up to 95%. A year also full of emotions of hope, despair, sadness, happiness and fear a roller coaster of emotions that even changed… Read More »Looking back

Hanging in there

Since Barcelona we have been mainly concerned with survival. Every effort is currently mercilessly punished with a huge relapse. If there is enough energy to do the effort at all. Unfortunately, the girls had to cancel many plans. The result is that they are becoming increasingly isolated.

Travelogue Barcelona

The journey actually starts the day before. Saturday we brought Ozzy, our dog, to my cousin. Quite scary because he has never been away from us for so long. Sunday, October 20, the time had come. At 9:00 we drove to the airport for the flight to Barcelona. The trunk with three suitcases and the walker. We had to be on time for the assistance at the airport. I requested this for both of them because they can’t stand that long. After we had reported to the assistance desk, we were waiting for the transport.… Read More »Travelogue Barcelona

Turbulent times, part two

The turbulent times didn’t stop and we’ve done a lot of interviews. Although all of the attention is really good for reaching our goal, it also has a great impact on Jane and Rosa’s health. Not only the physical health but also the mental part. And that also has an impact on the physical health.