The fear annihilated me. I was afraid of not being capable.
I did not understand the reason why, what I had to do, what I could do in my little town in southern Italy, where ignorance reigns, where for months we have been looking for help without finding it, where there is no idea how to deal with a blind person, where the Okur-Chung Neurodevelopmental Syndrome sounds almost like a dirty word. A thousand questions came to my mind …. Thanks to Silvia, I was able to contact the Dr. Unfortunately, I did not receive the answers I was looking for, maybe because it was difficult to interact due to the language barrier.
I subscribed to this group.
Braccialetti Cruciani - Braccialetti
A group of parents who live my own experiences, where I met Jennifer Sills, a super mother who is creating something great to help all our children and thanks to whom I met the wonderful person, Chloe, who helped me to translate this story. I read immediately all the stories published since the creation of the group. I felt less alone but at the same time frightened by the large number of symptoms that fortunately Samuel did not have, but that terrified me thinking it could happen any time.
As far as I can do on my own, I am trying today to support research, to bring knowledge and awareness in Italy, or at least in a part of it, on this rare genetic disease. Samuel has grown and exceeded all my expectations. He is a lively child who loves to play. He loves cars and his little horse toy and enjoys experimenting with his hands. He is well integrated into his kindergarten class where he is learning wonderful things and repeats everything he hears. He speaks very well and is starting to build sentences. He loves to color and to listen to music and he moves well to the beat.
Samuel has been suffering from sleep disorders these past months. It takes him a while to fall asleep. Often he wakes up in the middle of the night with his eyes closed and sits on the bed with a stiff body and does not want to be touched. He then calms down and comes in our bed a lot of the time. He has a minimal renal pielectasia of about 9mm, the upper gingival arch is slightly protruding and has not yet received his second molars.
He chews well enough but not well enough to be able to eat a larger size of pasta or pieces of meat. He often grinds his teeth. He is nervous especially with me. His behavior sounds very similar to an autistic child I know. He has been constipated since he was born. As a mother I notice and I pay attention to everything, and that might be wrong because observing your child constantly under a magnifying glass is not very healthy. Mi chiamo Rossella e sono la mamma di Samuel un fantastico bambino di 2 anni. Lasciai il lavoro con sacrificio lo ammetto, mollai tutto per dedicarmi al mio piccolo angelo tanto desiderato e cercato.
Facemmo 2 ricoveri per effettuare esami approfonditi ed escludere altre malattie. A novembre del ricevemmo gli esiti degli esami genetici, Samuel era affetto dalla malattia genetica rara chiamata Sindrome di Okur — Chung, una malattia neurologica ci spiegarono, scoperta nel , nel suo anno di nascita, della quale si sapeva poco o niente.
E il mio bambino sarebbe stato felice? X Provincia Milano Website not available. X Regione Lombardia Website not available. X Regione Sardegna Website not available. X Associazione di fondazioni e di casse di risparmio Go to website.
Volunteers and support groups in the '70s
X Fondazione Cariparma Go to website. X Fondazione Cariplo Go to website. X Fondazione Maria Enrica Website not available. X Fondazione Mediolanum Go to website. X Fondazione Monzino Website not available. X Fondazione Renato Grandi Go to website. X Compagnia San Paolo Go to website. X Fondazione Peppino Vismara Website not available. X Fondazione Vita Go to website.
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X Fondazione Zanetti Go to website. X Unione Europea Go to website. X Anta Go to website. X Acquario civico di Milano Go to website. X Alcatel Lucent Global communication Go to website. X Arte Investimenti Go to website.
X Autostrade Go to website. X Gruppo azimut Go to website. X Zelig Bananas Go to website. X Banca popolare di Milano Go to website. X Bloom Go to website. X Bravo solutions Go to website. X Canon Go to website. X Cap Holding Go to website.
Il sorriso come terapia.
X Cargo HiTech Go to website. X Coop liguria Go to website. X Coop voce Go to website. X De Agostini Go to website.
X Mensile di cinema e spettacolo Website not available. X Ebay Go to website. X Euronics Go to website. X apparecchiature elettroniche Go to website. X Mario Mazzucconi Website not available. X Microsoft Go to website.
X Monte dei Paschi di Siena Go to website. Today I think of something similar for this website, which I hope will become a space to reason together and to deepen thinking and practices. This website aims to provide a grid of interpretation and a space made available to reason together. This is a bet. Institutional events, individuals, firms, politics, ecology, families are all different meaningful context which we can study applying the systemic paradigm.
This grid to decode the world asks not to fragment what we study nor any interpretation; to respect subjectivity and multiplicity; it demands to give attention to the dense relationship with the context and to make transdisciplinarity the attitude for inquiry. It favors a self reflexive stance and the necessity to consider blind spots in a continual process of self-reorganization, in interaction with what happens. Systemic epistemology does not propose an exhaustive frame nor a determined stance. It proposes a way to observe, a stance and an operative attitude which, keeping steady the elements considered, changes the way to assemble them, offers new metaphors and new gestalt.
It allows to organize know how in different forms. For many years Heinz von Foerster has insisted that a systemic process should parallel the scientific model, so to take advantage of the possibility of using both modalities — different and complementary — to understand understanding. One proposes to divide ski: to divide , the other to put together sun: to conjunct.
The ambition is one of following the plot of the discourse of these new times, giving hints, launching stimuli, proposing ideas. I hope in mails, notations, contributions consequent to meetings and encounters. I hope to add pictures remembering places where we meet, recalling old times and speculating over the future. To add comments.
I confide in friends who send me their writings but also gags, funny stories, anecdotes. I criticized him though he could always see the bright side of everything, find resources where I saw only obstacles, seeming too positively excited. At the time I still liked playing with the abyss. But I was young, too young to appreciate life as he liked it.