Nárcisz was born on 13 August 2006. At eight months old, he underwent tests due to delayed motor development, which diagnosed him with SMA1. This is a genetic muscle wasting disease which, according to current medical knowledge, cannot be cured but can be kept under control. At the age of 7, Nárcisz underwent a laryngectomy, but he learned to speak with a laryngeal cannula. She loves to learn and has almost excellent academic results, even under difficult circumstances. Nárcisz began treatment with Spinarza in 2020. This is a drug that can be administered into the spinal cord via lumbar puncture, which greatly improved her condition. Unfortunately, over time, they stopped administering the treatment because they were no longer able to perform the puncture. Instead, they offered alternative options and have been searching for the right treatment for her to improve her condition throughout the country ever since. Over the years, she has completely lost her remaining mobility, so she is now completely bedridden and requires a ventilator at night. Despite all this, she is completely determined and confident, a real teenage girl.

Please support Nárcisz and his family so that Nárcisz can live more independently and enjoy everyday life like other teenage girls!