I was a normal child going to the third grade.
In the middle of the night, when I was in deep sleep I had an epileptic seizure and my mother automatically called an ambulance. I couldn't move. I don't remember the epileptic seizure, but I remember everything else. When I came to the hospital in Split they didn't know what was wrong with me, so they didn't know what medication to give me. They ran tests. Calcium levels were super low. They put tubes in my arms and I had to drink it but I puked every time so they mad me lay on garbage bags on top of the linen. They found out what was wrong with me six weeks later. I was still hospitalized. I remember that I had COVID 19, and I couldn't see my mother for eleven days and that I was stuck with two new born babies in the same room. The babies were screaming. No mothers in sight just a non-stop nurse service. Masked nurses like in a movie. After 1 was tested COVID negative they transferred me to oncology because they thought I had cancer or brain cancer like my room neighbour. After the test that said 1 didn't have cancer they thought I had epilepsy which they also excluded after some more test results came in. After Split I was in Zagreb also visiting doctors in hospital during one week because we were waiting for the genetics which were coming from San Francisco, The genetics came after six weeks from my first diagnosis. They discovered I had a really rare genetic disorder and it has a cute name: AECED syndrome. The doctors said it was like playing the European lottery to get that from both parents. So I guess I was maybe lucky.
Now every morning after lunch and in the evening I have to take medication, and if I skip them 1 will have to be hospitalized again .Now when my calcium level is low I sometimes lose focus, I have a headache or stomach ache with strong cramps, randomly 1 get really tired or get sometimes get sad without a real reason sad. Spasms can be dangerous because I can hardly breathe. This happened only twice during my soccer practice.
In addition to that maybe because of the stress I developed a weight problem, but I didn't eat to much food. So my endocrinologist doctor made me see a friendly nutritionist in the hospital. She measured my weight, my fat and fluids and she asked me about my eating habits. With things I usually ate she made me to follow a diet which consisted of very little carbs, a lot of fibre, a bunch of vitamins and proteins in fruits and vegetables and fish, lots of fish and very little meat. I had to eat five meals a day, approximately 1200 calories and drink lots of water. Instead of sweets she introduced me to some energy balls and nuts.
Basically I could continue practising soccer and tennis lessons which I cared more about but I had to eat less and obviously less sweets. leven managed to drop ice cream. I had really good results after two months, I lost about four pounds pure fat but I didn't loose any of my muscles. Today I still look fine and very often prepare my own meals. This whole food and diet thing made me food curious.
I sometimes wish 1 was normal like other kids, cause I don't remember the joy of not having to panic where my medicine is or not having to eat diet things because sometimes I just want to have a day that I can eat what I want like others, but the problem is that I am also on the verge of diabetes type 1 and some of my other glands are not in best shape either. Every day I think how happy I would be to be normal without all the hospital visits, but I know that the day I dream of is not going to happen anytime soon or ever, so I try being happy the way 1 am. Fortunately 1 was born in this century otherwise 1 wouldn't be writing this text. Fortunately I have a super curios doctor Marko who works with hundreds of children every year and still remembers my name and calls it out every time we meet. The nurses as well remember. This makes me feel ok there. Fortunately there is medication which makes me live.