Emanuel De Bonis, he is in his room, as always, lying on the bed, he is breathing loudly and seems to be staring at the ceiling. In reality he does not see, say the doctors, and he does not hear, he does not speak, he does not walk. He is 45 years old and his life has been like this for over 35. He was only 8 years old when, suddenly, his short life was turned upside down by a chilling diagnosis: adrenoleukodystrophy with spastic quadripresis. It is a degenerative and highly deadly disease that affects the snow system and endocrine glands. For the doctors who visited him, the battle of Emenuele should have been long over. And instead, thanks to the love of his mother, Anna Cervati, destroyed all tragic predictions.
The mother: “I couldn’t live without him”
To better understand the feeling that binds the 45 year old and his mother, just dive into the words of her, fragile and petite in the body, strong and tireless in the spirit, who defended him from everything, when even science did not know how to do and the world was crumbling under her feet. «Emanuele is my whole life – he says -. I know that something could happen to him at any time, I’ve always said it to myself, but I am not ready to lose it and I will never be».
The dramatic story
Emanuele’s drama, who lives with his family in Scalea, it starts early. He is a smart and intelligent child, at school he is a little genius, he knows the names of the dinosaurs by heart, but suddenly, from one day to the next, he misses entering the classroom, he no longer remembers what his is, he can no longer write in the line or to line up the numbers. Then he starts bumping into the walls. “Mom, I see double,” complains the boy. The visit to the ophthalmologist actually reveals a slight strabismus, which becomes more and more evident, but the optic nerve has no lesions of any kind and the doctor senses that it could be a neurological problem.
The hustle and bustle in hospitals
Instead of playing carefree like all tall children, Emanuele begins his tour in hospitals all over Italy, in search of the name of the disease that is slowly taking his strength away. Already from the first tac one is detected brain injury, but it is at the Carlo Besta Institute in Milan that his family finds out which monster he will have to fight against. For Anna and her husband the diagnosis is a punch in the stomach, especially when the baby begins to get worse by the hour. THE saturated fats, which your body produces in excess due to an enzyme that is not working as it should, are destroying some cells, which, in turn, are causing a irreversible neurological damage.
Anna’s strength
Anna becomes Emanuele’s oxygen. It is only she who understands her child’s moods, who senses when she is in pain, when she is sad or when she is happy. It always happens when his brother Eros comes to visit him, to whom he was and is very close. The woman wakes up at dawn to prepare him for a very strict diet, which limits, in some way, the progress of the disease. And she always appears in the most important television programs in Italy to denounce the conditions of families with disabled people, to denounce the havoc of a society that isolates and marginalizes people in difficulty. Anna is tired, but goes on, moved by unconditional love for her Emanuele. Then 10 years ago the bad luck came knocking on his door. Her husband dies and her parents also leave later. It is pain that adds to other pain and worries about health problems that a life full of suffering has caused her. Moreover, after the death of her husband, she is forced to live with the money from her son’s disability pension. But the woman does not stop and struggles with her nails and teeth to defend Emanuele’s rights and guarantee him a dignified future.
No Calabrian centers for Emanuele
Although she can count on the health care of the staff in charge, she is the only one who knows how to manage Emanuele’s disease, she has already gone into a coma three times during her existence. Moreover, the boy cannot be transported in an ambulance because the positions he is not used to would expose him to serious risks. “In Calabria there are no health centers that could accommodate Emanuele – says his mother -. We would need sanitized rooms because it has no antibodies, it would also need specialized personnel and also tools to control the fatty acids that are responsible for his illness ». But all of this in our region is a chimera. «The closest center is in Rome. But for transportation you should have a helicopter available. With an equipped ambulance the journey is at our expense and is about 2 thousand euros for the outward and return journeys. The last time we took him to a hospital was 5 years ago. ”
Together until the end
Anna is a very experienced woman, yet she has never dreamed of another life, she does not imagine it without her Emanuele, without her two children. Their names are tattooed on the skin. “I often think of what Emanuele’s life would be like if something were to happen to me – she says worried -, but at the same time I know that I could not survive his absence». He lives through his mother, while she remains on her feet to be able to hold him still in her arms. Despite the dark moments, Anna remains clinging to her greatest certainty: he would give Emanuele another 100, 1000 times to the world to be able to love him again.
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