The story of Alex – Chapter 3

by Luca Catalano Gonzaga

It started as a day hospital and Dr. Irene Bruno in charge of the Center for Rare diseases, preferred that Alex Granini was hospitalized for five days at Children’s Hospital Burlo Garofalo of Trieste. “When we were at the beginning, in the exploration stage of the disease, we went for check-ups every twenty days, in nine years of life we have greatly exceeded 50 hospitalizations abundantly” Patricia, the mother, recounts. The state of health of the child is very fragile, in particular because of the proneness to respiratory infections. Being such a rare syndrome that one does not know practically anything nor its developments, doctors at the Burlo Garofolo Hospital, the same ones who have been following him since little Alex was three, have preferred to take the necessary precautions and keep him hospitalized longer. In the days at the hospital all checks were carried out (stomacological, dermatological, etc.), a skin biopsy and an eye operation. “Emotionally the little one is fragile, he knows his disease well and one cannot lie to him, I remain as his one landmark- continues Patrizia – but from a medical point of view he has reacted well, apart from a small problem with an allergy to the general anaesthetic. Alex’s is a unique case that is of learning for the world (there are only 14 cases alike diagnosed), but every time I drive up to Trieste I am forever hopeful. (text by Sebastiano Caputo).

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