Overview

""What is the happiest moment in your day?"" ""Always! Have you ever seen me sad?"" ""Irene was so much greater, deeper and more sublime that I often thought that the genetic mutation was not a defect, but an attempt by nature to bring human beings to a higher stage of evolution."" In Jesi, in the province of Ancona, there is a library with a plaque that reads ""Irene Spaccia Library. The only disability is that of the heart."" This is Irene's story. Irene is a little girl affected by Marfan syndrome, a rare disease that usually allows a normal life, with periodic heart checks. Unfortunately, Irene has a very rare neonatal form, which requires European consultations. She is the rarest of the rare: she has a heart condition, is oxygen-dependent and is completely disabled and wheelchair-bound. But she has a brilliant mind. Her rarity, in fact, is not limited to her disease, but it extends to her entire person and her relationships with others. A testament to what can be achieved when healthcare, education and family systems work together. A story of struggle, love, faith and hope, which leaves important questions unanswered about how much still needs to be done to make sure that the right to health is truly guaranteed, illness is not perceived as something shameful and no one has to feel alone. A practical guide for dealing with the disease, from finding a diagnosis to recognizing social and health rights (under Italian law). The author donates 100% of her royalties to Fondazione Telethon.

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