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CLAUDIO MENNA

The long road home.   
 

[ongoing project 2015/21]


La letteratura medica indica che almeno il 30-40% dei bambini con la sindrome di CHARGE non supera i cinque anni di vita. Queste percentuali si riferiscono a delle forme estremamente gravi di CHARGE. Superata la prima infanzia, la mortalità dei pazienti affetti rimane comunque più alta rispetto a quella di bambini con altre patologie. La Sindrome o Associazione CHARGE è una patologia rara che può colpire diverse parti del corpo e viene riconosciuta come una delle maggiori cause di cecità e sordità.
La parola “CHARGE” corrisponde all’acronimo delle più comuni caratteristiche di questa malattia:

C = Coloboma
H = Heart defects (difetti cardiaci)
A = Atresia of the Choanae (atresia delle coane)
R = Retardation of growth and developmental delay (ritardo della crescita e dello sviluppo)
G = Genital anomalies (malformazioni dei genitali)
E = Ear anomalies (malformazioni dell'orecchio )



 

 

For L. present is an open bag wearing always with herself, a drawer she opens many daily times, when she’s sad and alone, from which she gets moments and remembrances remained clearly in her memory. Past is for  L. a wealth of experiences, motivation to do more and more, always better in a present done of troubles. Her personal road she goes through her daily life is difficult, often in climb and full of difficulties, but L. loves climbing herself on the sharp mountains, extricating in the urban caos, to be independent in spite of everything.
Every new experience is a new conquest, a new package of memories to place in a close bag, in her personal drawer.


 

L. is born with the C.H.A.R.G.E. syndrome, she’s blind. She doesn’t know what red. green or blue are, but she loves to sit on a wood bench (in the garden of the Institute for people with visual and psyco-physical diseases where she’s a guest) listening the sound of wind which moves waving branches and leaves, breathing  essence of present is a way to be happy for her She loves sea, even if she never see it, and she loves swim free, without restrictions and limits  of mental and architectural hindrance she hits everyday on her path.

For L. present is a continual transformation to evolve herself in the woman she dreams to be.
What she doesn't want to brood  in her mew life are 
few thing left behind, 
memories and flash back from her past. 

 

© CLAUDIO MENNA 2021. ALL RIGHTS RESERVED

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