Mele's illness

Emanuele is affected by a progressive and fatal metabolic disorder*.  At the moment, there is no known cure for his illness.

His pathology causes devastating neurologic, respiratory, motor-sensory impairments. He's quadriplegic and his body is floppy like a rag doll. He can still move his hands and head. He has continuous involuntary movements. He can not eat anymore, so he's being fed through a nose-gastric tube. Everyday he has seizures of variable intensity. Sometimes he looses consciousness, he needs to be mechanically aspirated and resuscitated by an inflatable balloon or by mouth-to-mouth breathing. Mele doesn't sit, he doesn't walk. Therefore he has got some aids including a small chair made to measure, that allows him to sit down for a while. He generally paints in this position. He doesn't speak, but he emits meaningful sounds understandable by his beloved ones. He doesn't laugh...Emanuele laughs inside!

*Emanuele’s pathology is technically called “Drug-resistant epileptic encephalopathy with  spastic- dystonic-dyskinetic components. Serious axial hypotonia, apostural quadriplegia, deficiency in Complex I of the mitochondrial respiratory chain and mitochondrial dna depletion”

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