- About why I flown around Europe
- About what you need a needle in the spine for
- About why I exercise a lot
- About how it is between people
- About he althy eating
- About what it's like to live with SMA
- About what will happen next …
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Hello! My name is Benio Pedrycz and I am 4 years old. I was born with SMA. It is such a disease where the muscles "disappear". And when they "disappear" completely, you die. I am now given a medicine that stops this "disappearance", but for the medicine to work, I have to work hard every day.
And do you know that we already know each other? My mother, Kasia, has already told you a little about me. About how I was born 2 years after my brother Boguś and about the fact that I was not as energetic as him. About the fact that when I was 7 months it turned out that I had SMA I. About how Mum understood that I could leave her, my Dad and Brother before I grew up. And finally, about how happy she was when it turned out that there was already a drug, thanks to which I could be with them longer, and that I would get this drug. If you want to know what I have experienced so far and what SMA is, I invite you here:
And what's up with me now? Oh, a lot is happening! I will tell you about what is most important to me …
About why I flown around Europe
When I was smaller, it was like that several times a year Mum and Dad packed me, my clothes, diapers, milk bottles and of course my cuddly toys, we got on the big plane and flew. First, we flew to France, and then to Belgium, because there was a nice doctor who agreed to give me medicine, after which my muscles will stop "disappearing".
These were short trips. Usually, on the first day we would fly in, on the second we drove to the hospital for a few hours, and on the third we returned home. Sometimes, however, when we were waiting for our flight home, we would stay longer. Then we made trips so as not to think about my disease and get to know these foreign countries. We liked these journeys, although my parents were very afraid whether we would fly again for another dose of medicine and where they would take money for this flight. They also had a plan that we might even move to where there would be a medicine for me. But fortunately, two years ago, for Christmas and almost for my birthday, we got such a gift that I can now take the same medicine in Poland. And parents don't have to pay for them.
About what you need a needle in the spine for
Because this is my medicine, it has to be injected into the spine. But to do this, you areor the doctor has to stick such a long, tubular needle into it. First, they wait for a little fluid in my spine to "drip" through the tube, and then inject medicine in its place.
It is important not to move while inserting the needle and administering the medicine through the tube. And then, when the needle is removed, I have to lie in bed for 4 hours. I would go home right away, but my mother explains that I need to check if I feel bad or if my head is spinning. Fortunately, after 3 hours I get eaten, because I can't eat before inserting the needle.
All in all: this needle is not cool, but I had to get used to it. Soon it will be my 13th time. Now I am getting my medicine in a hospital called the Children's He alth Center near Warsaw. And there are great playrooms and great kindergarten ladies. So everything would be great if it wasn't for this needle … Mom is glad that it's close to home and that other children with SMA don't have to fly any more, because they get this medicine completely free in many hospitals close to their homes.
About why I exercise a lot
It's simple: the more I exercise, the better the drug will work and the more muscle it won't "disappear". Eh … you don't even know what a busy 4-year-old can be …
I get up at 7.00 am. Honestly? I would still sleep it, but I know that then the whole day will "collapse". Because as soon as I get up, with the help of my parents, I will wash and put on my clothes, the exercises begin. Same every day.
Stretching first - especially the hips, because I'm not like other kids, I have never walked on all fours or straightened, so we need to do something to keep my thigh bones in place, which is in the joints and working. Then massaging. Then pressure on important points on my body (e.g. on my breasts) that Dr. Vojta once appointed. There are nerves underneath these points, and when you press them, your muscles work better.
And then Mum puts me in different positions and puts a bag called ambu over my mouth. And when Mom presses the ambu, my lungs get "supercharged" - the air from the ambu rushes into them and stretches out all the bubbles that are there. Thanks to the ambu, my lungs and the muscles between my ribs work better and make it easier for me to breathe.
And after these exercises we eat breakfast and Dad takes Boguś and me by bike to kindergarten. And there I have classes with other children and my own - for example, music therapy and movement exercises, or "bobaths" with various toy weights. And I'm still learning to pronounce words well. Dorota, who is a speech therapist, helps me in this. Oh, and I still have tofor more than an hour to stand upright - as other preschoolers say - in "armor". It is a "armor" that holds my armpits, torso and legs tightly. Parents call him: brace, or hkafo. And standing in "armor" is I need to grow up straight, make it easier for me to breathe more easily and for my stomach to work better.
Somehow, soon after lunch, Mom picks me up from kindergarten and we're going to town. And this is for some doctor, and again for the next exercises. And so on until the evening. And when we get home, before I go to sleep, I still have to do the same exercises every morning. And then it's already… I'm falling. This means: after reading the books!
About how it is between people
My kindergarten (Mum says it's called integrative) is also great! I don't like when I have to stop playing because my mother came to pick me up. Children are very nice to me. They bring me books, toys and sand for cake. They keep asking what they can help me with and they do whatever I ask them to do, but … Hmm … It's nice, but you know … I'd like to do as much as possible by myself. But I really like talking to children, or rather listening to them. I learn so many new things.
With Boguś - my brother, we also "have a bargain". When I can't get out of bed by myself, Boguś takes me by the armpits and pulls me out of it. Or if I glide too slowly on the floor on my bottom - because I can't walk - Boguś pulls me by the legs. I like playing with my brother. Well! Unless he's taking my bricks from me…!
About he althy eating
What do I like to do when I'm not exercising and having fun? Cook! It's fun and fun and exercise. Mom or Dad sit me on the table top and give me a bowl in which I mix something or mash it. I also like to check in pots if something is cooking well, or to cut cookies with cutters. And I work best with food robots and their buttons in the whole family.
I like to eat eggs, pancakes and broth the most. No, I don't have any special diet. Parents make sure that our food is he althy. So we eat a lot of vegetables and fruits. Only I eat slower than Mum, Dad and Boguś, and even children in kindergarten. And they have to wait for me to chew everything thoroughly and swallow it. Because I don't have the strength to eat as fast as they do. And I won't open my mouth that wide. But they are not upset that they have to wait for me. Because it's important that I eat alone. Ba! I not only eat alone, but I will also raise a glass of drinking to my mouth. And I swallow droplets called vitamin D. I only have droplets, but other SMA children also have a lot of other vitamins to swallow.
About what it's like to live with SMA
Parents say it would be good to haveone doctor who would take care of me so completely. He checked whether my SMA was developing, whether I had all the vitamins and minerals in me, whether I eat well and exercise, he said: you have to do this and this, and then he explained it to all other specialists, because now parents have to do it. For now, we have to go separately and to the doctor and many other specialists. And to the physiotherapist, who tells me whether my "armor" (because I have several of them!) Fit me and whether it is not necessary to change them, because I grew out of them. And also to the gentleman who examines whether I breathe well and how my muscles work.
My mother goes with me most often, because she doesn't work. She says that it is so strange in Poland that she cannot work because she gets money from some office for looking after me. But there is so little of these money that Dad has to work for her and for himself. Mum would also like to work, but she had to choose: either work or taking care of me, and you understand … Dad is an urban planner. Draws city maps. And it also teaches others how to do it. He teaches at a school called the Warsaw University of Technology.
Oh, Mom and Dad also help other parents of children with SMA. I am surprised how they do it, that they still have time for us to swim together in the pool, ride bikes and skate together.
About what will happen next …
If I knew …? Now, every few months, I take my medicine and exercise. Thanks to this, I already know what legs are and what they are for. When I wear them with my orthoses, I can stand on them by myself. And when I have a walker, or someone holds me down, sometimes I come away. Short and not too far, because I get tired quickly, but still walk! And when I get tired of walking, I sit on my stroller. Recently my parents connected a battery to my wheelchair and I can drive it myself. And this management is a difficult art and I have to be careful that I am not interested in something else. And there are so many interesting things!
Mom says that now I blow more than I used to, and thanks to that I speak more and clearly. Even soooooo long sentences. And this talk suits me, because I get along faster with my friends and I can explain what I want, what I need.
Mom and Dad say that now such important people will decide whether I will still receive my medicine in Poland. Mom says they'll definitely agree to it. And we hope that there will also be new medications for SMA in Poland. Those who are already abroad. And that every baby, right after birth, will be tested for SMA or not. Because you wouldn't even know me if I had gotten the medicine sooner too. If that happened, I would probably be racing with Boguś nowbike and prance around the playground without any SMA symptoms.
I wish all children with SMA that they can just play and explore the world, and not keep exercising, so that they can breathe and move better. I know that I will have to train as hard as I do all my life to be he althier. But that's okay! I can handle! You will see - one day I will go for a walk myself and stand in the goal on the pitch. Please keep your fingers crossed for me!
If you want to cheer me on: https://www.facebook.com/beniunieznikaj/