The Ring Child E-Book

Giustardi Annamaria

• Herausgeber: Associazione Ring14 Italia ONLUS
• Kategorie: Gesellschafts- und Liebesromane
• Sprache: Englisch

Veröffentlichungsjahr: 2017

Beschreibung

This short fable helps us telling, in a simple and understandable way, even to the most little, our lives and our children’s, affected by this ugly disease: the Ring 14 Syndrome. We can make understand how difficult it is for them to do things which are pretty easy for the others, and how sweet it is to feel accepted and not excluded, as it often happens, even if they are good hearted and are fantastic children. Disability, when severe as for our children, frightens and pushes away, especially when you don’t know the cause. We hope that The ring child may reach the homes of many families with children affected, to bring a little consolation to their isolation; and it may also reach healthy families, to open every heart to disability, removing from the illness the aura of fear, which always accompanies. And we trust that the world of fables, where everything is possible, enters the lives of all the children who are in difficulty like Matteo. Stefania Azzali, Matteo’s mother
and president of Ring14 Association.

Leseprobe

Annamaria Giustardi

Illustrazioni di Livia Saetti

The Ring Child

A short story to feel less lonely

Literary rights reserved

Copyright 2011

Casa Editrice Mammeonline

Mammeonline Comunicazione snc, Foggia

www.casaeditricemammeonline.it

ISBN (Print): 978-88-89684-45-0

eBook by ePubMATIC.com

For all those afflicted by Ring 14 Syndrome and for all those who love them just the way they are.

… that you hid these things from the wise and understanding, and revealed them to infants.

The Gospel of Matthew, 11:25

CONTENTS

Because I Wrote the Ring Child

Annamaria Giustardi

Here Talks a Mother

Stefania Azzali

The Ring Child: The Project

Annamaria Giustardi

Pedagogical Introduction

Francesca Pergetti and Silvia Fontanesi

The experience of the class IV B, primary school Renzo Pezzani, Reggio Emilia

The Ring 14 Syndrome Explained to Children

Angela Scarano

The

BECAUSE I WROTETHE RING CHILD

I know their suffering, their loneliness, their sadness and effort. But I also see their joy, their sweetness, their smile, their courage and strength. Feelings, stories and people to talk about with completeness, to rip the indifference and fear from oblivion. Events which are hard to tell with daily words, because they’re too cruel to be heard by just anyone. I have borrowed the language of fables to tell the stories of these children and their families. The ring child is a fantasy story that encloses all the reality that fables bring, where everything gets resolved because in fables anything is possible. Also finding out about the evil spell disease (that’s so scary for those faraway) through hearing about those whose lives have been turned upside down by it, and learning how to face it without fear, because “the iron ring”, “so strong nothing can destroy or remove it” is completely powerless against solidarity and understanding.

Annamaria Giustardi

HERE TALKS A MOTHER

Imagine you wake up a morning in spring, with the perspective of an usual day, work, school, family. Imagine you are thrown in a moment into an unknown reality. And even when, after many, many months, this reality shall have a name: Ring 14 Syndrome, this name will mean nothing. More, it will add other mystery to the obscure evil that began to afflict your child and all of you who love him.

I asked: “What does it mean? What shall we expect?”. I was answered: “We don’t know, there are so few cases in the world”. Then, we would have known it is a rare disease, and this makes the children who are affected even more different in their being already different since they are ill.

All the explanations consisted in a list of well-known symptoms, so far from our reality until that time. My son, and all the other children affected by the Ring 14 syndrome, have mental delay, microcephaly, psycho-motion delay and epilepsy. And their epilepsy is though, strong, and difficult to defeat. Often they do not talk. Or, better said, they used to talk, but the first hard convulsive crisis has stolen their words. More often they find difficult to eat, because they suffer from malformations in the oro-gastric apparatus. In some cases they can feed themselves only with a little tube.

Our time is very difficult to organize, and stand, and live, and tell. The easiest thing to do, but also the most dangerous, since it takes your breathe and hopes away, is to close up in among the few of us who know what the Ring 14 Syndrome is; avoiding questions, explanations, and glances that, even if made with deep and sincere interest, dig deep furrows of pain in our days.

The Ring14 Association, founded in 2002, efficiently supports all these problems and has, as a final purpose, to promote investigations aimed to a higher knowledge of this pathology.

But we were looking for something more, something different, capable of reaching all ears [...]