"Dear Marco, maybe I am unknown to you, you probably know nothing about me, but certainly you know that in these last days I have prayed God to help you ...".

This it the beginning of one of the numerous letters the students of Sangemini (a small village in the Italian region called Umbria) have sent to our son. These simple words summarize the feelings of people of our small village for the dramatic end of our son Marco.

Marco was 19, had Duchenne Muscular Dysrophy, and up to November 30 (1999) had a "normal" life. Suddenly, that night, while we were in Reggio Emilia (in the region Emilia Romagna) to try a corset, he had a severe cardiac and respiratory insufficiency failure. The acute phase had been well controlled and settled by the staff of the local hospital and few days after he was able to "walk" out being sure that he had overcome a bad moment and willing to continue to fight for a happy life.

Two months later a new attack: the emergency call, the rush to the Hospital of Terni (Umbria region), the E.R. and the emergency doctor who does not want to start any treatment saying in two words that the disease of which our son suffer "... is a severe one, progressive, and drives to this end ...".

Marco is put in a medical room, gasping for breath, unassisted. We could not only stay and watch. With the support of other doctors and a policeman, we go back to the E.R., look for the doctor in charge and the former emergency doctor and ask them at least to call the hospital in Reggio Emilia for a phone consultation. We are told that "persons with muscular dytrophy are no-code patients and that we are not ready to accept the development of the disease", and that he was the doctor ( actually more than a doctor he thought to be God!).

After six hours spent in that medical room, finally Marco is transferred to the E.R. of the hospital in Foligno where he dies five days later.

Our question is: could Marco be saved? Maybe not. But should that attack be the last one, it should have been let to a God's decision not to the will of an arrogant and not professional doctor. It may seem absurd, but Marco has perceived the burden of his handicap in the town and in the hospital where he was born.

In this sad way his story has stopped. Yes, his story, because his life has been like one of the fairy-tales that his mom used to tell him at night to make him sleep. But unfortunately, now, he will not wake up anymore.

February 2000