My story
My name is Leo and I was born into this beautiful and interesting world on August 23rd 2021. My parents say that I am the most amazing child in the world but I heard on the playground that all of us children are amazing to our family and basically to the whole world. However my mom is worried as I did not come into this world completely healthy. I do not know yet what “completely healthy” really means. My parents could tell you more about it, with my never-ending insomnia. Perhaps it is caused by the visits of many people who look at me and advise my mom and dad how to exercise with me. The doctors themselves do not exactly know the real cause of my health condition. Adults call it a congenital developmental defect. Dear children, but as I said at the beginning, each of us is special, exceptional.
All I know is that I am missing a large part of my right leg and my dad tells me that I have to exercise a lot so that we do not neglect anything. My mom takes care of me well but she did not know until the very last moment that I would be born like this – special. The doctors told her at every check-up that everything is fine and that my measurements are ideal. Of course they are! Now I am going to think of something fun to amuse my parents again.😊
On the day of my birth my parents heard the name phocomelia for the first time. Later I was diagnosed with fibular hemimelia, which was renamed abroad to tibialhemimelia. All this has to be confirmed by another MRI, which is accompanied by endless visits to various unknown doctors and rehabs. You might ask how come I know all these words. I did not know them at all and neither did my parents until they found them on the Internet or had them directly explained by doctors.
I say this website is ours, because it belongs to all of us, dear children and parents. We want to share our experience and compare it with yours. We would like to help this community by educating others in the field of rare diseases, diagnoses and syndromes. We want to help you and us equally, dear friends, so that we can all help each other and live our lives fully.
Mainly to fulfill our beautiful and big dreams.
