The Stories We are, Ilaria: “They called me Hunchback of Notre Dame, today I laugh about it”

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“I was born with one neurodegenerative disease (Type II Sensitive Neuropathy) with profound deafness, to the point that when I was born it was thought that I would never have the opportunity to walk ». Thanks to a great determination and an intense work of physiotherapy, Ilaria Muresu instead at the age of 4 has upset all the plans of the doctors and started walking. “During the period of growth, the scoliosis caused by the disease got worse, so much so that I got to have an emergency operation. It was thought that the surgery would lead me to go straight, but it was not so. During the 18-hour surgery I had a cardiac arrest but thanks to the head of resuscitation, I came back to life, if it were not for him, I would not be here ».

The surgery was like a second chance for life for Ilaria. And she decided not to waste it. “In my hometown, in adolescence I already had a nickname that I initially couldn’t bear: The Hunchback of Notre Dame. Then I got used to it and started to like it. Today I have my back as it did 11 years ago, in fact it has worsened by 20 degrees but the psychological growth has helped me a lot. I have learned to accept my body for a few years because before I was struggling a lot. Over the years, I began to discover the world of disability and I learned about Paralympic fencing and that to hold a foil I had to sit in a wheelchair ».

During the pandemic, Ilaria and two friends had the idea of ​​creating transparent masks so that you could see the lip. “We were desperate because we did not understand and we still do not understand who speaks with a mask that covers the mouth. We were afraid of being discriminated against by society once again. For us deaf, everyday life at school or university is already very difficult ». The idea was then a great success. “We managed to produce 2,500 transparent masks that were donated free of charge to private individuals (deaf citizens and family members) and to many centers including the Don Gnocchi Foundation of Milan and the Municipality of Rozzano”.

Today Ilaria has decided to tell about her days on Instagram to send a message to all the people who live with a disability: “There are no perfect flaws because none are. Never be ashamed ».

You can send your stories here: +39 3472156843, via Whatsapp.

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Source: Vanity Fair

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