The sensations dictated by the disabling symptoms, the fears, the conflicting emotions, the hard fight fought and won thanks to the many people who were close to her, starting with two doctors with hearts of gold.
There is all this in the book «My journey into darkness», written by Nicole Minardi, a thirteen-year-old girl from Parma who was diagnosed with Pans Pandas syndrome, a term which indicates a post-infectious neuro-inflammation of autoimmune origin with symptoms neuropsychiatric disorders with sudden onset.
Nicole is recovering thanks to multidisciplinary treatments, she has achieved remission of those symptoms that steal the childhood of thousands of children in Italy and around the world and has now got involved by telling her story to send a signal of strength and ask the competent institutions to recognize finally the syndrome, currently without therapeutic lines and treatment paths.
This unusual illustrated book, with a preface by the director, writer and author Federico Moccia, will be officially presented on Friday 8 March in the prestigious setting of the Queen's Room of the Chamber of Deputies, in Rome.
The event will take place from 3.00 pm and will continue until approximately 6.00 pm.
The objective of the initiative, promoted by the GenitoriPans Pandas Bge ODV Association, is twofold.
On the one hand, listening to the precious testimony of Nicole, who in recent months had met Prime Minister Giorgia Meloni, receiving full support in the request for recognition of the syndrome; on the other, the opportunity for a moment of reflection on the topic with various experts.
In fact, many parents and children who experience unspeakable suffering with Pans Pandas syndrome and the doctors who were the first in Italy to study the subject and provide adequate medical assistance and treatment to the children will be present with their testimonies.
Many well-known faces from the world of culture and entertainment will then speak, who have given their availability to be spokespersons for the message and the families' request for help, on a topic that concerns various aspects of daily life, from health to school to sociality.
The program initially includes institutional greetings from Stefania Lessio, president of the PansPandas Bge ODV Parents Association.
Then the presentation of the book with the author Nicole Minardi and the intervention of the psychologist and psychotherapist Magda Valeri and the actress and producer Maria Grazia Cucinotta.
They will be accompanied by the journalist Stefano Rizzi with the participation of Lucrezia Di Marco and Alvise Oniga: both with Pans Pandas in remission thanks to an early diagnosis, Lucrezia accompanied Nicole in her request for recognition of the syndrome, while Alvise at just five years old is a little genius of the violin.
The readings of the book will be by the actor Danilo Brugia.
Following this, some national experts, the pediatrician and rheumatologist Fernanda Falcini, the neuropsychiatrist Carlo Capone and Alberto Spalice, neurologist from the Pediatric Neurology of the "La Sapienza" University of Rome and the Policlinico Umberto I, will discuss in an in-depth medical-scientific debate. having accompanied Nicole on her journey to overcome her illness.
The conclusions will be entrusted to the lawyer Emanuela Bellante, the president of the Pans Pandas Bge PDV Parents Association Stefania Lessio and Giovanni Gravili, president of the I Nodi D'Amore ODV Association and responsible for institutional relations for the Pans Pandas Pge Parents Association.
Finally, the presence of representatives of government institutions is expected.
The screening of before-during-after-illness videos provided by some Italian parents is planned.
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