My name is Teodor. I live with Prader-Willi syndrome (PWS), which is incurable for now. PWS puts great obstacles in my way, which I persistently overcome. I wish that a cure for my disease will be found soon and I can live a normal life like other children.

My arrival in the world was followed by a difficult period. PWS develops before birth, but is difficult to diagnose. In my case, not even an amniotic fluid sample could detect it. My condition after birth required several weeks of hospitalization in the neonatology ward. On the nineteenth day of my life, I was diagnosed with PWS.

After birth, I suffered from severe muscle weakness, was almost immobile, did not cry, had difficulty eating, was fed with a nasogastric tube and suffered from malnutrition. This condition gradually improved, thanks in part to the careful and demanding rehabilitation I underwent several times a day. I am now more active, but my psychomotor development is delayed.

My parents, determined to do their best for me, gradually overcame existing and incoming health problems. After four weeks of life, we were able to put down the nasogastric tube and I managed to drink a daily dose of skimmed breast milk, gradually I started gaining weight and reached a healthy weight, I started waking up to eat. Thanks to daily injections of growth hormone and regular rehabilitation, I began to make motor progress. My progress is checked by neurology, endocrinology, anthropology, orthopedics and a nutritionist. I have some form of therapy every day, attending physiotherapy, swimming, hippotherapy and clinical speech therapy. Despite noticeable psychomotor delays, I rejoice with my parents and the people who help me in making small but steady progress. My developmental milestones are delayed, yet that does not take away the joy of reaching them. My parents believe that with regular care and a motivating environment, my development will be favorable. But the fact is that in the future I will face many health problems and will be faced with great challenges.

The biggest challenges are yet to come for me and my family. In childhood, my syndrome will develop its most pronounced manifestation, among other health limitations, which is hyperphagia manifested by a persistent intense feeling of hunger, without the possibility of achieving a feeling of satiety. Hyperphagia is also associated with a range of behavioural disorders. A person with PWS never feels satiated, even immediately after eating. The need to eat prevents sufferers from living fully and independently. They need constant supervision to prevent them from overeating. In addition to hyperphagia, PWS patients unfortunately suffer from other health problems.

I want to live life to the fullest, yet I am hungry for therapy so I don't have to be hungry all my life. Still hungry for a cure.