About the Ebook
What does it mean to be the parent of a child affected by a rare disease? How does one live with the uncertainty, with the silence of science, with the awareness of being alone? Through a journey, both personal and photographic, “I Am” asks questions, while meeting with eight Italian families with children affected by trisomy 9 mosaicism, a rare illness with eleven known cases in our country. A chorus of voices demanding an identity.