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Clementine Hall
Monday, 30 April 2018



Dear Friends,

Thank you for coming! Thanks to the President, Davide’s father, who presented your story and also this initiative that you have brought here to Rome in the sign of hope.

I am always pleased to meet associations for research and support concerning rare diseases. Of course there is heartache for the suffering and the struggles, but I am always struck by — and admire — the will of families to join together in order to face this reality and do something to improve it. You, Giorgio and Rosita, have felt within you the drive to do something for him and for the people stricken by an extremely rare disease, and for their families.

The name you have given your Association, “A Rare Life”, says a great deal, because it expresses Davide’s reality, but also your reality with him, in a positive, not negative way. The negative side is there; we know that. It is an everyday reality. But, this name says that you know how to look at the positive side: that every human life is unique, and that if the disease is rare or extremely rare, it is life, first and foremost, to be so.

This positive view is a typical ‘miracle’ of love. It is love that does this: it is able to see the good even in a negative situation; it is able to protect the tiny flame in the midst of a dark night.

And love creates another miracle: it helps us to remain open to others, able to share, to be supportive even when one suffers from a disease or a burdensome, exhausting condition in daily life.

I think that this very attitude, for which I thank God, also generated the 700-kilometre race which began 10 days ago from your home and arrived today in Rome: a race for life and for hope. I congratulate all those who have given life to this “Rare Words Run” and those who have collaborated.

I thank you again. I will pray for you and for your Association. And you too, please, pray for me. Thank you.

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