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

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

Mo en Siem blogpost

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

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 give up and always have fun is what she taught me. It is only some of many things and I apply these lessons to my own day-to-day life. I am so happy that we are together! Shymo and I have known each other since 2015, before she got sick. rom the first time we met we already had a connection and we never lost contact. I’m glad because she is my true love and I already knew that at that point. But then Mo heard that she got sick and everything changed. This event and the loss of functions in her body was not good for her self-image. “No one will like me like this”, was her thought. It became my goal to always be there for Mo. Often people ask me: “why a girl in a wheelchair?” Because I love her, no matter what. She believes so as well and together we are capable of anything!

Our daily life changes constantly. I help Mo with her daily routine: shifting and moving her, showering, shaving her legs… you name it. Together with Ilonka (her mother), Ruud (her father), Zyara (her sister) and her brothers we are a strong team that takes care of Mo. Ruud and Ilonka took me into the family this year and treat me like one of their own. I feel at home and welcome and am really grateful for this. Together we ensure that Mo’s life is as normal as possible, she deserves this. Mo is kind, beautiful and the strongest woman that I have ever met.

Blogpost Zyara

Through the eyes of a sister

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 again? These questions often go through my mind.

Mo, two and a half years ago we discovered that you are sick. It seemed so innocent but look where we are now. This is so mean and it sucks. The bond that you and I have is what all sisters should have with each other. We could do almost anything together: shopping, go out for a coffee, to the beach, festivals and parties, or sell our clothes at the vintage market; I can keep going like this for a while. I am so happy to have you as my sister. Yes, I dare to say that I cannot wish for a better sister than you!

The day that I heard you have tumor, I was in Malta. My first week out of the ten that I had to be there. My world collapsed; I wanted to go home, be there for you, join you to the hospital, watch movies together… But you told me to stay in Malta and have fun. “You went there for a reason and we can facetime every day” you said. So I stayed. You were right, but it felt weird.

I don’t say it out loud normally, but I am having a very hard time with this situation. All those setbacks every time are like being hit against the head with a frying pan. But then you, the strongest person I know, say “screw them, I am not giving up!”. And then I think “Yes, Mo does not give up! We go for it”. And that is how you drag me through all this drama.

Mo, you are the strongest person that I know. So down to earth but at the same time fully aware of what is happening and the risks that are involved. You always want to make the best out of a situation, have fun and stay positive. Because what is the added value of being sad? It won’t make you feel better. Your mindset is something that a lot of people can learn from.

Sometimes it is tough. Because I want to do stuff with and for you. But lately you are very tired and not feeling that well, which is because of the medication and treatment that you currently get. That is when I often realize that you are sicker than you actually look like. That is a compliment Mo, because even with all of this going on, you still look really good. And look at everything that you are still getting done even while you are feeling so bad. That is amazing, it really is.

The only thing that I still want to tell is that I am very proud of you, of everything that you do and how you are doing it. You are an amazing person.

I love you.

Lots of love,
Zyaar

Shymo en Mirte

Can you imagine that you best friend suffers from cancer?

Mo asked me to write a piece about how I feel and how I experienced the past period. I will try to be as honest as possible, so you can see my experience as best friend clearly.

My name is Mirte and I’ve known Mo since third grade. We walked into the classroom, we looked at each other and I knew instantly: this is my BFF. We’ve been inseparable ever since. Unfortunately, we did get separated in the first year of high school, but she came back to my school for the second year. In the fourth year we were in the same class, finally. That was noticeable when u looked at Mo’s grades, though. She had to repeat the fourth year, when I proceeded to the fifth. This was the year Mo found out she was sick.

So, my best friend is sick. Terribly sick. This has been going on for two years, at least. At first, it was unreal for me. I mean; can you imagine that your best friend suffers from cancer? I have to admit that I still don’t realize it yet. Especially the past period was really heavy. A few weeks ago, she was hospitalized because she was in a lot of pain. They didn’t know what caused it. And what’s happening now or what the doctors can do, they don’t know either.

But how do I feel about this?

It’s hard. But I’m very down to earth and don’t realize all the stuff that is happening surrounding Mo. I’m not sure yet if I can’t or won’t realize what is actually going on. It could be that since Mo is always so down to earth about it. She was already like this before all this happened.

A while back I joined her to the hospital. The atmosphere of the Princes Maxima Centre is very pleasant, while before I actually went there people told me it can be quite an emotional rollercoaster to go there. The thing is: I don’t see Mo as ‘being sick’ or a ‘patient’ to me she is Mo, my friend. The days Mo spends in the hospital are heavy. Leaving home before 07:00 in the morning, travelling for an hour, going from appointment to appointment, lots of waiting in between and finally home around dinner. I admire her a lot.

My way of processing this is actually very stupid. Because I don’t. I just continue with what I’m doing until for example I ruin my mascara and then suddenly I have to cry a lot. Not because of the mascara (because who cares), but because something is bothering me. Sometimes I notice this through my body. I become nauseous or very tired. It takes a lot of energy to suppress all of this. As I said: very dumb and not the right way to do it, but this is how I deal with it. As I said: very dumb and not the right way to do it, but this is how I deal with it.

If there is any news, she always shares it by sending a text message. I think we both appreciate this method of communicating to talk about her and the hospital. It gives me the feeling that when we actually meet, we can talk about fun stuff. Happy to say that we still laugh a lot together.

Over the last period, news from the hospital meant bad news. When I see that a message has been sent or when I hear my mom say “Mirt, Ilonka send us a message” I know enough. Stupid right? I automatically expect the worst, while that doesn’t have to be the case at all. I can still learn a lot from Mo and her incredible positive mindset.

So, what do I feel about this? Simply said: it sucks.

Still, I truly believe that she will fully recover, with the help from all of us. I want to thank Siem for all the support that he gives to Mo (and me as well). I am so happy that he is around. Also I truly appreciate all the commitment from everybody. Bizarre but truly heartwarming.

I am so proud of my friend and I truly admire her for how she’s going through all this. So strong and such a great mindset. We can all learn a good lesson from her.

I love you Mo and remember we’re doing this, together.

Lots of love,

Mirt

Foto Ilonka en Shymo

A little thank you from Ilonka to the hospital

The question our family gets asked most frequently is: “How is Shymo doing?”. We’re doing OK; we’re taking it one step at a time. If you’re with Shymo every hour of every day, you don’t really see that her condition is getting worse. Our home is modified on many fronts, to make it as comfortable as possible for Shymo.

Two weeks ago she still was working out on the hometrainer with the physiotherapist. A day later she was in a lot of pain and the day after we came home with adjusted pain medication. The day after, we raced to the hospital because Shymo was in unbearable pain.

She was hospitalized immediately in the Princes Maxima Centre in Utrecht. Pain, fever; everyday she would get a higher dose of her pain medication. I was with her twenty-four hours a day. There I stood beside her bed: holding her hand, giving her a sip of her drink… I felt powerless, helpless, and desperation.

The kids in the Princes Maxima Centre are definitely the greatest. And the staff; all of them are amazing. It did not matter if it’s a doctor, nurse, janitor, therapist or people from the food trolley. They all showed care, warmth, understanding, love, patience, and were very personal and really professional at the same time. Compliments to the hospital for getting together such a great team of employees.

Shymo is now home again after a week and I’m trying my best to be as good as the food trolley.
Thank you, amazing people of the Princes Maxima Centre.

Ilonka
Shymo’s proud mama

Our target amount and goals

Dear all,

Thanks to your help we have already been able to collect € 25.000,-! That is great news, but we are far from done. In this blogpost we want to explain to you about how we got to the total amount and what it is meant for.

As you know, Shymo’s lifesaving medication is situated in the United States. This medicine is still in development. That is why it is hard to obtain and very expensive. If Shymo can only get the treatment in the US, she will need to travel there every four weeks for approximately two years. Also, the insurance company does not cover the expenses and everyone knows American healthcare is very expensive anyway. Especially medication which is not easy to obtain! And last but not least, Shymo will have to provide a medical bail. This is for possible medical complications.

We are talking about:

  • medication: €150.000,-
  • medical bail: €100.000,-
  • travel and residence: €130.000,-

Since the amount is ridiculously high and we don’t want to be entirely dependent on just your donations, we set our target on €300.000,- for Shymo’s treatment.

As of today the target of €300.000,- will be placed on the homepage, as well as the amount of donations we already received!

We are now going to tell you something about the goals of our foundation. We understand that you want to know where your donations will end up. The primary goal of our foundation is ‘To collect money for Shymo Korver so she can afford and acquire medical treatment abroad, to cure her from her illness’. This concerns all the cost mentioned above; travel and residence, medication and the medical bail.

“But what if Shymo is cured and you still have money left?”, we get asked multiple times. The people behind the foundation truly believe that Shymo will get cured from her illness. That is why, during the process of writing down our goals, we thought about Shymo’s future. Therefore, the second goal of the foundation is: ‘and after being cured to support Shymo in realizing a living environment where she can function independently’. An adjusted living environment can be very expensive and since we want to support her in this financially, we included it as our secondary goal while setting up the foundation.

We hope that with this message the target amount and goals are clarified sufficiently. The fundraising had a very good start, but we are not there yet! So please keep spreading the message and donating and by doing so, helping Shymo to a bright future!

Welcome to this website

Dear all,

Welcome to the website of the Help Mo Now! foundation.

With this first blogpost we have officially begun with collecting funds for Shymo’s lifesaving medication. Donate and help Shymo on the road to recovery and to a bright future.

The board of the Help Mo Now! foundation consist of Gylian Korver and Charlotte Rubingh. If you have any questions about the foundation you can contact them per email at [email protected], or by telephone on +31657333814.