Bootcamp voor Mo

Bootcamp for 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 yet existing for eight weeks. You only have to walk into a random store and you will notice traces leading you to the one and only Mo. And even more, you can not think of something that is not being organised by the community with only one purpose: let the counter on helpmonu.nl rise as quickly as possible. On Sunday the 15th of September, it was up to Shymo’s gym, the SMC in Zaandam, to collect as much money as possible for their brave sportster. The form in which they have cast it was a real bootcamp, through which they raisen an amount of 732,45 euros.

“Before I got my disease I did dancing, not this kind of stuff”, Shymo says smiling while she is looking at her friends and family getting tired out in the bootcamp. “When I am going to the gym here, I’m doing a lot of boxing. I has become my new favourite sport and besides that you are training almost every muscle with it.” Having Evi (a friend) and Charlotte (her sister-in-law) by her side, she seems to enjoy herself easily while watching the bootcamp. “I expected it to be hard for them, but this is way more of a challenge than I thought it would be. Fortunately they’re still smiling.” Approximately forty sporty people have come to their feet, with the primary intention to collect money. “But the most important thing today is, I think, that everyone is having a good time”, Shymo says without a second thought. Due to the consequences of her disease (amongst other things a paraplegia), Shymo is moving herself around in a wheelchair nowadays. She cannot participate in the sporting activities organised on behalf of her. “Of course I feel sad about that”, she explains, “but I do have the feeling that I’m one of them at the moment. Honestly, I am feeling part of whole in every event that I have been to so far, and that is worth something as well.”

If we talk about Shymos endless positivity, as a human being you could only feel a indescribable admiration. Well, you could also be very jealous, or you may be incredibly surprised about it. “I really never met a personality like Shymo before”, says Margreet. She is one of the participants in the bootcamp and also Shymo’s’ mother in law. “That is not something I have been realising since she is ill. No, not at all. I know Shymo way longer than that, she lives only 50 meters further in our street for years now. Shymo was known for that amazing personality I’m talking about far before the cancer came knocking on her door”, says Margreet. As Siem his mother, Shymo’s boyfriend, she is very thankful for the fact that she can stand this close at Shymo’s side in her fight. “How she and Siem are taking care of everything is really admirable, but I’m also very happy that I can sometimes help out as well. The families are keeping themselves kind of behind the scenes when we are talking about the foundation. Particularly in the daily life we are trying to help out the family and especially Shymo as much as possible. Sometimes only walking the dog could be of great help when the whole family has moved to the hospital to be there for Shymo.”

Unfortunately, Shymo’s situation at the moment is not as positive as she is herself. “What I find the most difficult thing to accept as a mother and a mother-in-law, is that Siem and Shymo are turning into adults so quickly this way. There are so many moments when I’m thinking: guys, you should be at a festival right now. But at the same time, I can see that they are so incredibly happy at the moment and in their own way they’re making a festival out of life. Only in a different version than most youth nowadays, for example in the shape of a cup of coffee at Aloha (Shymo’s favourite beach restaurant), or a glass of lemonade on the balcony.”

This active Sunday afternoon we can frankly call a successful Sunday afternoon, for Shymo as well as for her family and friends. “For now it is really waiting for any news from America”, Shymo explains. “For everyone, to be honest. As soon as we are getting a green light, I am heading off to Washington. Every month, where I will get four pills everytime I come there. That is one for every week. ” When the bootcamp ended, there was waiting a heart-whole surprise for all participants. Jolanda van der Meulen made, together with her kids, the first original MOdailles from 3960 beads, 72 rings and 72 little buddhas. Shymo took the first, because of course she can call herself the winner of the day. Or actually the winner of the year. Because Shymo, you are so unbelievable decisive, inspiring, beautiful and incredibly strong. If your mental strength could be turned into physical strength, you would probably be participating in the world championship boxing next year. And I think we are all perfectly sure: that stupid cancer is never going to beat your cast-iron personality.

By Fleur Grandiek

Emma's Uitleg

Emma’s explanation

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 tumor.

To understand what the H3K27M mutation means, we first have to look at what a mutation is. Our bodies consist of around 37 billion cells. Each cell has a nucleus that contains DNA. Your DNA is also known as your genetic material.You got half of it from your mother and the other half from your father. The DNA from one cell can be compared to a “cookbook” because it contains the instructions, which are called genes (“recipes”), for what a cell can make (“bake”). With the instructions from one gene (“recipe”), a cell can make one protein (“dish”). Each cell in your body has the same DNA (“cookbook”), but because not every cell has the same function, different cells can use different genes (“recipes”) to make different proteins (“dishes”). When a cell does use a gene to make proteins, this gene is said to be active. When a gene is not used by the cell, it is inactive.

A mutation is a change in your DNA. A mutation is not necessarily bad, but a bad mutation can have very harmful consequences. An example: the recipe that you use to make an apple pie is probably different from the one that your neighbor uses (one recipe has mutations compared to the other recipe), but both apple pies are tasteful. But if you are going to add chili powder (a bad mutation!) the end result will probably not be as good…

The mutation that the cells from Shymo’s tumor have, is called H3K27M. Let’s find out what this means. The DNA in one cell is 2 meters long. For this to fit into the cell, the DNA is very tightly wound around little balls of protein. These protein balls are called histones. Histones consist of 4 different types of proteins and one of those is called H3. The cells of Shymo’s tumor have a mutation in the gene (“recipe”) for the H3 protein (“dish”). Cells that have this H3K27M mutation make both normal, good H3 histone proteins and mutated, bad H3 histone proteins. The bad H3 proteins do not function properly themselves and they also block the good H3 proteins from doing their job.

So what do these H3 proteins normally do? In a normal cell, histones can get certain marks. Some of these marks make the DNA wind slightly tighter around the histone balls, while other marks make the DNA wind slightly less tight. When the DNA is wound more tightly, the cell can no longer use the genes (“recipes”) on this part of the DNA (like the pages of your cookbook are stuck together). These genes will then be inactive. On parts of the DNA that wound less tightly, the genes will be more active, which results in more protein being made.

Scientists are not yet completely sure what the effect is of the H3K27M mutation. Based on their research so far, they think that the bad, mutated H3 histone proteins cannot be marked properly. They also think that the bad H3 proteins prevent the proper marking of the good H3 proteins. Without the right marks on the H3 proteins, the DNA will be less tightly wound in certain places. This causes some genes to be more active than they should be. This, in turn, can cause the cells that have the H3K27M mutation to divide more often. For each cell division, a new copy of DNA must be made, to make sure that after the cell has divided itself in two new cells, both new cells have their own copy of the DNA. While making a new DNA copy, mistakes, or mutations, can be made, just like when you make a spelling error while copying your apple pie recipe. The more a cell divides, the more mutations this cell can gain.

The H3K27M mutation was probably already present in Shymo’s cells when she was still very young, maybe even when she was still a baby (although I don’t know this for a fact). or 16 years, the cells with this mutation could have too many cell divisions, gaining more mutations each time. This way, one of the cells in Shymo’s spinal cord gathered exactly the wrong combination of mutations, that together caused this cell to become a cancer cell. When Shymo was 16, this one cell had grown to a tumor. You can read what happened next in Shymo’s story on this website.

I hope that reading this blog post helped you understand what the H3K27M mutation means. If you have any questions, please let me know!

Source of information: https://www.nature.com/articles/s41467-019-09140-x#Sec9

Shymo sporten bij fysio

Shymo’s Blog: exhausted

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 and I do that once in a while and we enjoy it a lot! They cook and we for example bring the dessert. During our latest visit I also gave an interview, so that was a late night! Wednesday I started the day with a radio interview on channel FunX. Yes, it was an early morning, but that doesn’t matter… Alright, it did matter a bit since I don’t sleep that much, haha. After that I went straight on to participate in the morning show of “het AD”, thereafter I went to physiotherapy and in the afternoon a photographer popped by. Thursday I started the day with an interview on Radio10 by Gerard Ekdom, after that I was another session of physiotherapy. In the afternoon there were even more things planned, but it was just too much at that point. I was exhausted and I actually still am. But as we move on to Saturday I could finally enjoy a bit of sun, I think I deserved that, right? Also my skin could use some vitamin D, you don’t get prettier by sitting a month inside, I can tell you that! So at that point I was fully enjoying my series in the sun; amazing. This week felt like a race, but I also feel satisfied. In the end I did overstep my boundaries, I noticed.

Sometimes I get the feeling that people forgot that I’m sick, I have the same sometimes. I don’t mean that in a negative sense; I’d say it is more of a compliment, because people tell me that I look good and energetic. That gives met the feeling that I have loads of energy and that I can do a lot, actually too much. For example, after having my exercise I still have the feeling that I can go to the forest; well guess what, that is not the case as I immediately fall asleep on the couch. I also noticed during all these interviews that it costs a lot of my energy. That is not the only thing where all my energy goes to: since I have two big bedsores on my back which are not healing properly and if your body doesn’t have that much energy the whole process takes a lot longer. I will safe you the pictures of my bedsores, especially for the people that don’t have a strong stomach, haha. What I’m trying to say is that not everything is always what it seems. Much more things are happening on the background regarding the foundation and getting cured. You might not always notice that, which makes sense. If you have the time, maybe it is an idea to look up what comes around with a paraplegia or dexamethasone (which is the reason for my swollen face). But I also don’t know everything the comes around with a paraplegia as everyone’s situation can be different.

Despite that this week was actually too much for me, I did enjoy it a lot! The people who shared my story were all very kind and compassionate. I also am fully convinced that I did a good job and that gave me a lot of confidence! Siem and I also laughed a lot this week, for example during the morning show. You don’t get to see what happens in advance, but it was very casual so we could joke around a bit before we went live. I was a very fun, but exhausting week. Would I do it again? Absolutely! But then I would take it a lot more into account how much energy it would cost to avoid a total breakdown at the end of the day. That is why the whole weekend I did absolutely nothing to regain my energy. Sunday I did have lunch with two friend. I noticed that it makes me feel well: having a social moment and not sitting on couch, as you can find me a lot over there.

Tip: take care of yourself and be aware, self-care is very important.

Mo en Evi

With Shymo to physiotherapy

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 would be this excited to have a heavy workout like this, but Mo really enjoys it. Also, the fact that we go together makes it a lot more fun.

Mostly, we are in the car by 9:10 and drive to SMC Fitness in Zaandam. We always get a warm welcome, because everyone there already got to know Mo in the meantime. Mo always starts with cycling. Because Mo can’t use her legs herself, her therapist will hold them in place on the exercise bike so Mo only has to make the cycling motion. Mo told me that she loved to cycle before she became wheelchair bound, so this way she gets to experience it a bit again.

Shymo’s physiotherapist is really sweet. We couldn’t have wished for a better help for Shymo. She always does her best to make it as comfortable as possible and helps Shymo the best she can. She even put a large donation pot on the bar!

After cycling, Mo sometimes trains her arms on the fitness equipment or she goes to the treatment room. In the treatment room Mo always starts with stretch exercises for her legs. After that, it’s time to sweat. Sometimes she trains her arm muscles and her abs. The exercises Mo does are really tough. I’ve never seen anyone workout this hard!

When the physiotherapist leaves the room, Mo and I have to work together on exercises. There is an exercise where Mo sits on the bench and I put out my hands one at the time and Mo has to tap them while she stays upright. It sounds like a simple exercise, but for Mo this is really tough because it is difficult for her to keep her back straight and sit still like that. This exercise is always fun to do together, because I can really encourage her and see her winner mentality up close; she really wants to do well. Of course this exercise doesn’t always go smooth, but that is not Mo’s fault. Often it’s because I say something Mo has to laugh about and then she loses her position. The two of us always have to laugh about this.

When the physiotherapy is done, we often do something fun. Grab a lunch on the beach, get a Mcflurry at McDonald’s or eat a sandwich at the local deli. Our Monday’s are always really fun days where we can chat and laugh with each other. Not only I find it really fun to tag along, but I really like to help Mo too. I can’t cure her, but I can be there for her as a friend and support her with things as physiotherapy.

Dear Mo, I hope you’re feeling better soon so we can go to physiotherapy and do all the fun outings together. I love you.

Big kiss,
Evi