Shymo’s blog: two weeks in the hospital

Shymo ECG

19-11 This evening they’re going to run some blood tests on me. It is because I have been lying in bed for two days feeling terrible and I have no appetite at all. It’s not going well. My temperature is high and I’m in a lot of pain. We assume that it is because my […]

Shymo’s blog: what’s next

Hoe nu verder post

10-10-19 Tomorrow i’m going to the hospital. would finally get my new medicines, but I think I’ll have to wait for another week as my doctor did not receive all the required permissions just yet. I don’t mind, what does a week extra matter on top of all the months that I’ve been waiting. That […]

Bootcamp for Mo

Bootcamp voor Mo

Bootcamp for Shymo: she can’t do the sports herself, but she is definitely stronger than all the participants combined It is safe to say that Shymo has become an understanding by now in between the boundaries of the Zaanstreek (the area Shymo lives at, bordering Amsterdam). Even though the foundation Help Mo Nu! Is just […]

Emma’s explanation

Emma's Uitleg

Hi, My name is Emma and I was the biology teacher of Shymo when she was a student at ‘het Zaanlands Lyceum’. In Shymo’s story you can read that the cells of Shymo’s tumor have a mutation called H3K27M. In this blog post I will explain what this means and how this mutation probably caused […]

Shymo’s Blog: exhausted

Shymo sporten bij fysio

01-09-19 You won’t believe how hectic this week was!On Monday I went to physiotherapy and after that straight onwards to the rehabilitation center for my bedsores. Tuesday I had to go yet again to the rehabilitation center and after that I went to Gyl (my brother) and Charlotte (my sister in law) for dinner; Siem […]

With Shymo to physiotherapy

Mo en Evi

Before Mo’s hospitalization a few weeks ago, I picked her up every Monday to go to physiotherapy. Physiotherapy is really important for Shymo. It’s the moment for her to have a nice workout and warm up her muscles. I often ask her if she’s excited to go and the answer is always “YES!”. Not everyone […]

Shymo’s blog: the worst

Bios foto

06-08-19 The last couple of weeks a lot of people asked me what the worst thing is that I am going through or have gone through. For now, the worst I can think of was the recent hospitalization. What matters to me is that during the process of losing strength, functionality and feeling in my […]

Siem: “Mo is the strongest woman that I have ever met”

Mo en Siem blogpost

I’ve been Mo’s boyfriend for a year and a bit now. A year in which a lot has happened. Having a girlfriend with a severe disease can be tough, but Mo and I are still having a wonderful time. I truly enjoy it and am learning so much from Mo’s perspective of life. Fight, never […]

Shymo’s blog: hair loss

Laatste bestraling

03-08-19 I started losing my hair already; we did not see this coming. Totally unexpected and quite early. My mother and I thought it would be nice to have a hair-wash-day, but that turned out into something else. Hair kept falling from my head up to a point that it became so much that we […]

Through the eyes of a sister

Blogpost Zyara

Shymo, my little sister, my friend. We would have thought that you of all people would become sick? And why you? This disease only happens to people that had a long life already, right? And how will this continue? Will my little sister always remain in a wheelchair or will you be able to walk […]