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Student Blog: My experience volunteering for ASRIMM

03 December 2019

In our final student-led assembly of the term, and the last (for now!) in a series of inspirational charity-based presentations over the past week (the Protect Our Winters Assembly last Monday; the ASRIMM presentation by ASRIMM representative, Leena; and the MACS Assembly and Charity Day), Nastya (G12, Russia) delivered an outstanding speech this morning on her experience volunteering with the children of ASRIMM a few weeks ago. Keep reading to have Nastya’s day brought to you in vivid detail, and to be inspired by her impassioned and moving reflections…

Good morning everyone! I am very honored to be standing in front of you today and I would like to tell you about my experience of spending a day with and taking care of children with rare genetic diseases on a weekend stay organised by ASRIMM - a charity organisation that you already know about. No, actually, hold on a second… I wouldn’t want to tell you about it at all because I would rather you experienced it as I did!

Well, you might say, “We cannot go back in time and live it again!”, and you would be absolutely right - we cannot. But what we can do, however, is turn on our imagination and picture it in our head as I am sharing it with you!

Let’s try it out first; let’s warm our brain up a little bit since it is the first thing in the morning that I ask you to do…Could you please imagine something that you are craving right now, say hot chocolate with marshmallows, for example, or your bed, or strawberries, or swimming in the sea, or skiing, or coffee, or tea, or ice skating, or…okay, that’s enough! You did very well by the way! :)

Now, could you please imagine a room about the size of our library, very bright, with wide tables alongside high windows, two comfy couches opposite a black piano, and one little boy sitting in the far corner looking at a board game. That is what Mrs Woodhouse and I saw when we first came into the room where I spent that day with ASRIMM. So how do I feel at this moment? Well, to be honest with you, I am very nervous and uncertain because I have a lot of questions on my mind: I don’t know what we were going to do today, or how I should help, or why this little boy is alone in that room, or what to say to him…so many questions!

In a moment, all the other people come in; more precisely, they are five children (four boys and one girl, who…guess what!...who has a birthday today - very exciting!); and each of them has a carer - a person who stays with them the whole time and takes care of them. Why? Because being in a wheelchair, with no muscle strength, not being able to hold anything in your hand and being constantly in pain, is hard - would you agree? That’s why they all need someone to help them and always be around them. There is also one man - the organiser, responsible for everything. And… … … me. (For those of you who like me - can’t do maths, we are 12 in total!)

We start this day off with breakfast. I am helping to set the table with bread, jam, cereals and hot chocolate  - mmm, yummy :) And as soon as we are done and the table is clean we are off to a surprise activity! Do you have any idea of what it might be? No…Well, none of us had either! It is a real surprise; however, we know one thing - it’s going to be outside…even though it’s freezing!

So, we are all getting ready and I am helping to put warm clothes on the children. A very important thing is that we have to put on as many thick layers as possible on them because due to their lack of movements the children can get really cold very quickly, so in order for this not to happen they have to wear a couple of pullovers and a very warm jacket. Okay, now we are ready!

We walk out the front door and look on our right-hand side - it seems like we entered another world with beautiful trees and a huge field all covered in snow. But there is nothing else around us - where is the surprise?

So we do a couple more steps and…we start seeing something coming towards us! That was the surprise! Ooh, I looked at the children and I could not believe it, because in a matter of a split second they got really excited and enthusiastic, whereas their carers didn’t because they saw this…

This is a cross-country vehicle, which simply means that you can go on it wherever you like such as snow for example. And this is a very nice surprise because the children get to ride it themselves at a very high speed (up to 30 km/h), which feels like running. Plus, they are able to ride anywhere they want, which unfortunately is not possible on a wheelchair.

The rules of the game are: first of all, there has to be at least two people on each vehicle because we cannot let a child go alone in the forest; second of all, we have to hold on really, really tight because it is very bumpy and fast; and, last but not least, we have to enjoy it and scream if we want!

We broke into small groups of two to three people and set off into the unknown! From the very first meter of our journey I was impressed by how brave the children are! They did not hesitate and went straight into the woods at maximum speed! I must admit I did not expect it to be that bumpy but it was so much fun.

So, I am looking down at the road so that I could see the bumps coming and I realise that we are going right into mud! The boy who is driving his carer and myself doesn’t intend to slow down at all, so we fly over bumps and mud as if it was a completely flat and clean track. Oh my goodness, how scary it was! Our boy draws circles and eights and wants to be faster than his friends, so his carer and I were feeling a little bit sick afterwards, but none of us could stop laughing! I realised that these children do not have the slightest fear and enjoy every moment to the fullest!

The whole morning was spent outside having fun on these machines. We are finally standing on the ground again feeling safe but exhausted because it was very hard to hold onto the vehicle in order not to fall over on unexpected manoeuvres performed by our little boy. The first thing I do is that I turn around my head and look at the lady who was riding with me and she looks back at me; then we look at our boy and we are speechless because we are all dirty from top to toe! I believe that each of us has about three kilograms of mud all over our clothes and even hair! Sadly, I don’t have any photos of us like this, but I think you can imagine that it was pretty bad! So we started to clean ourselves up but it wouldn’t rub off, thus we were laughed at (in a friendly way) by the others for the next little while. Then it was time for a delicious lunch with different types of pizza and a drink!

When lunch was over, another great activity was coming up – making glazed crafts in the form of Christmas decorations! It was an amazing opportunity for the children to be creative, determined and to produce beautiful hand-made edible presents for people they care about. The process was challenging because they had to apply force to roll sugar paste but it was a good exercise for their hands. They were also very patient and did it with a lot of love. That’s why the results are so attractive and unique. Each of us had three masterpieces in the end. We shared some of them with one another and tried them - they were delightful!

By this moment, it is late afternoon and one boy is heading off to take a shower. I am asked to help his carer and the organiser so that I can have a little insight of what it is like and start to learn how to take care of people with disabilities. With the help of his carer and the organiser, I have to undress him first, which is a challenge on its own as it takes two or more people to do so. The next thing is to move this boy from his wheelchair to another one that is dedicated to taking a shower, which is even more difficult and it takes at least three people to do so. Once it’s done, we can now wash his legs, his back and his hair because these are the parts that he is not able to reach. During this time a happy song is playing in the background and I accidentally look at his eyes - and I am shocked. I am so impressed by what I see: his eyes are full of joy and grief at the same time. There is so much pain hiding…but there is also so much strength to handle it. He is sitting there, dancing along with the music but I just froze. He is so strong and happy with what he has despite all the difficulties that he, this little innocent boy, is obliged to face.

I help him to get dressed but this feeling that I got does not leave me. We spend some time in his room listening to his favourite songs and I see that he needs so little to be happy and I start to understand how greedy and rapacious we are because we have so much and we still need more and more without limits; we often, very often, do not appreciate what we are blessed with.

So, we go downstairs to the main room and it’s already dinner time and time for me to leave. I look at the children - they are breath-taking in their fortitude! The youngest boy, the one who was sitting alone in the room this morning is trying so hard to get the ball from the ground but he is just not able to bend his knees or bend over because of the weak muscles of his back. But he tries anyway. Every single time the ball falls, he goes for it and tries again; and I believe that, one day, he will get it on his own!

I would now like to show you a very short video about people with rare genetic diseases.

This video makes a fundamental point: every person who has a rare genetic disease is a real person. They are the same as us because they have feelings and they want to be accepted by society. These amazing children that I was so privileged to spend a day with are the same as any other child because they want to have fun, they want to be happy and they want to be loved like any other child that is out there, except that it is more difficult for them to enjoy their lives. But, what a paradox - most of the time they are even better at finding positive aspects in their extremely hard situations than we, healthy people, are in our daily lives.

I hope that by sharing with you my experience today, it gave you a good insight into how meaningful yet fun the day of a volunteer can be! I also hope that I managed to arouse in you the desire to participate in such life changing and eye-opening events and to share with such lovely children moments of happiness that will remain in your memories for many years!

 Thank you very much!