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Taking a break

Since we started crowdfunding and the foundation Help Jane & Rosa battle CCI / AAI to get the money together for the life-saving operation that my sister Rosa and I need, I feel like I have to be on all the time.

Turbulent times

It’s been a while since the last blog. This happened partly because of a lot that was going on in our livers and partly because of my own health. So what happened.

Just another day

I’m in my bed. Far away I hear Jane talking to Ozzy, our dog. Go and fetch mama she says. Jane is on the floor, belly down. I ask Jane what happened and if she’s hurt. Jane said she fainted and dislocated her shoulder and hip.

Media coverage and other events

Media coverage and other events This week it was all about local media coverage. Last Friday there was an article on Westlanders.nu and it immediately had a great impact. A lot of people made a donation en we jumped from €23.000,- to €25.000,- in two days. It’s really great to notice that media coverage is so effective. We now have a sixth of the amount we need. We have written to all the local media and on Monday half past one  I’ve received an email from a local radio station, WOS radio. They asked if… Read More »Media coverage and other events


This week I received the rejection letter upon my request for reconsideration regarding the decision not to reimburse the Upright MRI. And in the same letter, the consultation in Barcelona was also rejected.

And now…

After a brisk start, the funding now runs less smoothly. We’ve passed the €21.000,-, which is great off course, but it would be better is things were going faster. From different sides people asked me why I haven’t reached out to the local or national media.

It’s humbling

Sometimes when I think about all of this I find it humbling to see what everyone is doing to help us reach the necessary amount of €150.000,-. After my birthday las week a kind off was a slump buster. Not because I’m now part of the “old ladies gang”, as my colleagues called it, but because of after reaching the €20.000,- frontier the donations seem to be stagnating.

Blog Grandmother

I think they call it a blog, but I just want to let you know how all of this makes me feel. Because I’m very concerned by the whole situation. I can’t stop thinking about it. It’s the first thing on my mind when I wake up, and even when I’m out doing groceries, the only thing I think about are those two girls, my granddaughters.


People often ask me if it isn’t hard for me, doing all of this on your own? And I think by myself, why hard for me? I’ve a full live, a great job, nice friends and family and yes, I’ve got two chronically ill daughters. But that is in the first place very hard for them. They’re the ones having to deal with all the pain and suffering and limitations in their daily life. And off course it hurts me to see them struggle through the day or when they have to cancel plans because the body just doesn’t cooperate. But still, it especially effects them and is hard for them. I can’t complain.


We’ve started the fundraising a week ago and the it has a big impact on our family life. Like me, Jane and Rosa are not the asking for help type. So the fundraising and the reactions to results in quite a bit of tension in the house. This had several consequences.