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Antonio Boemio father of little Rita, 3 years old girl suffering from a rare genetic disease, the "infantile systemic hyalinosis" . Only 20 cases certified to the world and when there is only my daughter in Italy. About Me story began three years ago. Nobody knew that this disease, no research laboratory that study, no association who would take charge and give attention to these few children, like all the others have the right to a dignified life.
I felt very lonely but I have not given up. Today, thanks to the suggestion that I founded the Association Telethon Onlus ISI, first in the world dealing with this disease in order to know the same.
I would like to make the life of us parents that without suffering because we have not had the joy of seeing our children run and play, but violent cycles of physiotherapy in the hope that can bring benefits such as being able to eat by themselves, scratching o giocare con qualche bambola. Aiutatemi a trovare altri angeli affetti da questa malattia oltretutto difficilissima da diagnosticare.
Grazie di cuore.
Antonio
Sito: www.associazioneisi.it
Email: isi.associazione@libero.it
I felt very lonely but I have not given up. Today, thanks to the suggestion that I founded the Association Telethon Onlus ISI, first in the world dealing with this disease in order to know the same.
I would like to make the life of us parents that without suffering because we have not had the joy of seeing our children run and play, but violent cycles of physiotherapy in the hope that can bring benefits such as being able to eat by themselves, scratching o giocare con qualche bambola. Aiutatemi a trovare altri angeli affetti da questa malattia oltretutto difficilissima da diagnosticare.
Grazie di cuore.
Antonio
Sito: www.associazioneisi.it
Email: isi.associazione@libero.it