Seeing the world through the eyes of a child helps some grown-ups to change their attitude towards life, but what happens if this child lives with a severe chronic illness and endures obstacles many adults never have to bear. Marlon* is eight years old and has a disease that doesn’t even have a name yet. The only thing he knows is that he can feel it every day. He recognizes he is different from other children.
As soon as I wake up in the morning, I am in pain. Every joint in my body – especially my neck and hips – hurts. Crawling out of bed already depletes half of my energy for the day. Mommy prepares breakfast for me, and right after I have to go to school, which I hate because it is so exhausting. I would prefer to stay in bed. That is where I feel most comfortable. But Mommy says I have to attend school. Somehow her face looks as if she feels sorry about it. However, I am not allowed to stay at home.
Usually, I have to get up very early because it takes me a long time to get dressed. My joints wobble back and forth, which is why I have a hard time walking or standing. I need to wear braces and orthoses to be able to move a little. Those stiff, uncomfortable plastic pieces support my unstable joints, so I won’t fall. Putting them on isn’t great, but I am a big boy and can do it all by myself. I don’t like it if Mommy has to help me. Other children my age can achieve this themselves, and so can I! Mommy writes notes for me, so I won’t forget anything. During the morning hours, I am too tired to concentrate and would forget to store my medication in my bag or to put on my hat. On one of those notes I wrote: “Tell Mommy goodbye and wish her luck for the day,” because this should be said before I leave the house.
I am old enough to understand that I am sick. I notice it every second. Most of the time I feel like my head would just fall from my shoulders, and when I complete my homework, I have to rest my head on the desk. Writing hurts my fingers. To finish just a couple of sentences, I have to wear braces. My illness is invisible from the outside, but all the more I can feel it on the inside. I cannot sit on wooden chairs or walk long distances. Sometimes I have to use a wheelchair; wearing braces is not always enough. That does not make my disease go away, but it helps me get through the day.
Marlon is an eight-year-old boy and one of 30 Million people in Europe to live with a rare disease. 75 percent of patients that are affected by 7000 different rare conditions are children. Many rare diseases are caused by gene defects, which is also the case of Marlon. However, medical professionals cannot name his condition at this point. They found a mutation on one of his genes that has never been seen in any other human beings. Marlon is really special. His joints are hypermobile, which means Marlon can move everything beyond the normal range and that causes lots of injuries. Additionally, his muscles are weak and therefore cannot compensate his wobbly joints. On top of the hypermobility, other connective tissues in his body are affected. Organs, such as his lungs, heart or gastro-intestinal tract, do not work as they should. Pain accompanies Marlon every single day and can lead to a severe exhaustion, which is why he does not want to get up and go to school in the morning.
Mommy drives me to school each day. I would love to join my classmates and take the bus, but I cannot. The bus is crowded in the morning and the other kids would crush my body. Since nobody notices how sick I am, none of them offers me a seat; and I would never ask for one. I have to wear a neck brace because my neck, just like my other joints, is too unstable and that’s dangerous. Due to my issues with my lungs, the neck brace cannot be too tight, otherwise I couldn’t breathe freely. On the other hand, if my brace is too loose, my head moves around on top of my neck. Mommy used to worry about this a lot, which is why she checks the seat belt and all braces many times before she starts driving.
For two years I have been hiding from her that I cannot carry my school bag anymore. In pain I dragged it behind me and would not allow her to help me. I dislocated my wrist and fingers by doing so, but my pride was too big. After all, I am almost a grown-up! Men should be able to do things like that, shouldn’t they? I could see tears in my Mommy’s eyes. I think she recognized the pain I was in, but also understood that I just wanted to be like all the other children. At some point I learned that she was right, and today I am using a trolley.
After the first hour of school, I am tired, which my teacher does not understand. She wants me to practice writing and make me write these long texts, but I cannot achieve this. My finger and back hurt too much. As a consequence, I started to eat a lot of fruits to become stronger. Mommy says, I have to tell the teacher: “Stop it! I am in pain!” But, what is the use? Since my teacher doesn’t care, I just quit mentioning anything.
While all the children have their lunch break, I sit in my class room and try to file my sheets in my folder. I haven’t been able to do this while in class, which is why I have to continue during breaks. Unfortunately, this doesn’t leave any time to eat. If I occasionally make it to the break, I cannot open my lunch box – and nobody helps me with it. So I am hungry all day long. Mommy is angry with me when I tell her that I cannot eat at school, but the teacher is even more upset if I do not sort my paperwork properly. I prefer to miss my breaks, because my teacher doesn’t notice whether I am hungry or not, but she very much recognizes if I did not take care of my sheets.
Marlon attends an “integrative school” which is supposed to support children with special needs and disabilities. Still, he does not get the help he requires. “One of the main issues is that Marlon’s disability is invisible for the outside world. He does not want to miss out on anything other children can do, which makes him compensate the whole day until he breaks down at home – invisible for his teachers,” says Marie*, Marlon’s mother. Marlon’s parents chose this specific school because of it’s credentials: 10 years experience with inclusion of disabled children. It was their first choice. Sadly, Marlon falls through most racks. He is too special, his disease is unknown and complex. “He has to wear slippers at school, and therefore must take off his braces, and later put them on again. His teacher said that he cannot have any “advantages” over other children, so he must change shoes just like his classmates,” Marie says. Often Marlon is exhausted and overwhelmed after school and asks his mother why he cannot finally stay at home. Marie criticizes the school: “They don’t understand how serious his situation is. With one symptom or an allergy, they can live, but not with Marlon’s complexity, in which things just suddenly change or new symptoms appear. That is obviously too much for them.”
Rare Disease Facts & Figures
If other children have an argument, I am the one to solve it. A person that eliminates conflicts is called a mediator, and I was appointed to be exactly that. Furthermore, I am the speaker of my class, because I listen to everyone’s problems and can easily understand them. I believe I got this ability because I have never been healthy. The first thing I do as soon as I am home after school is to throw away my pants – my hips hurt so badly. My body is red and swollen. Wearing my pyjamas works better. Now I have to do my homework even though I can hardly keep my eyes open. Only with great effort can I finish my assignments. No more energy is left to meet friends. Occasionally I might see one for an hour, but on some days talking is too exhausting. Those couple of friends that visit me are mostly disabled themselves, which makes them understand my situation better than healthy children. Leaving my house alone is impossible. Whom would I ask for help if something happened? I am not allowed to speak to strangers. Sometimes, my sister takes me with her to the mall and I may buy gummy bears. I would really love to be normal, and have fun, climb trees or run. I would want to know – only for once – how it feels like. With my illness this never happens. I am who I am and cannot change it.
When I was younger, I couldn’t accept my limitations. Mommy used to cook meat and I have never eaten it. Then she would get upset, since she made such an effort. I haven’t told her for a long time that I, for sure, was hungry, but could not hold a knife and therefore wasn’t able to cut the meat. I was so terribly annoyed! After all, I was not a baby anymore, and did not want Mommy to cut my food for me. One day, I had to reveal my secret. My occupational therapist then created a foam cover which allowed me to hold my knife. Sometimes there are easy ways to fix my problems, but other times there aren’t.
If I want to achieve a goal, I succeed! I even learned to swim and secretly got a medal for it. I surprised Mommy with it on her birthday and she cried out of joy. I can also play the piano. Well, I have to wear all my braces to do so, but it works! Mommy enables me to be this active and I love her for her support!
Many times I ignore my limitations, which is quite silly. The next day I feel extremely exhausted and everything hurts. I know I should not do this. I cannot even get up on the day after. Sometimes I just forget about it and it happens again. On the next day I regret what I did and ask myself: Why can’t you just be normal?
If I had one wish, I would want my illness to disappear, so I could live in peace. What other kids do, that is what I want, too.
Today I am so tired that I cry in the evening. I cannot endure all this again tomorrow! I need a break! “Why can’t I just stay in bed?” I ask Mommy.
She says: “Yes, why can’t you?”
Translated from German. View the original German article here.