At noon today (6:00am EDT), in the Clementine Hall at the Vatican Apostolic Palace, the Holy Father, Pope Francis received in audience the members of the A Rare Life Association, at the conclusion of the nine steps of the Rare words run - Rare Words Race which began on 21 April in Monticelli Brusati (BS) and arrived today in Rome. The purpose of this run is to symbolically give voice to those who are suffering from Allan Herndon Dudley Syndrome (AHDS-MCT*) and those who support the Association, which is committed to supporting scientific research and health care for the treatment of rare diseases.
Dear friends,
Thank you for coming! Thanks to the President, the father of Davide, who presented your story and also this initiative that brought you here to Rome as the sign of hope.
I am always happy to meet associations involved in research and solidarity regarding rare diseases. Of course, there is the pain of suffering and hardships, but it always strikes me - I admire - the desire of families to get together to face this reality and do something to improve it. You, Giorgio and Rosita, together with Davide, your son, have felt within you the urge to do something for him and for people suffering from a very rare disease, and for their families.
The name you gave the association: A Rare Life, says a lot, because it expresses Davide's reality, but also yours with him, in a positive, not negative way. The negative, as we know, it is an everyday reality. But this name says that you know how to look at the positive: that every human life is unique, and that if the disease is rare or very rare, it is still life that is precious.
This positive outlook is a typical miracle of love. It is love that does this: it knows how to see good even in a negative situation, it knows how to keep the little flame alight in the middle of a dark night.
And love does another miracle: it helps us to remain open to others, able to share, to be in solidarity even when we may be suffering from a sickness or a heavy condition, worn out by everyday life.
I believe that from this same attitude, for which I thank God, the 700-kilometre race was born. You started ten days ago from your home and arrived today in Rome. A race for life and hope. I congratulate all those who gave life to this Race of the Rare Words along with all those who cooperated with you.
Thank you again. I will pray for you and your association. And you too, please, pray for me. Thank you.
Greetings of the Holy Father, Pope Francis
offered to visitors from the
One Rare Life Association
Dear friends,
Thank you for coming! Thanks to the President, the father of Davide, who presented your story and also this initiative that brought you here to Rome as the sign of hope.
I am always happy to meet associations involved in research and solidarity regarding rare diseases. Of course, there is the pain of suffering and hardships, but it always strikes me - I admire - the desire of families to get together to face this reality and do something to improve it. You, Giorgio and Rosita, together with Davide, your son, have felt within you the urge to do something for him and for people suffering from a very rare disease, and for their families.
The name you gave the association: A Rare Life, says a lot, because it expresses Davide's reality, but also yours with him, in a positive, not negative way. The negative, as we know, it is an everyday reality. But this name says that you know how to look at the positive: that every human life is unique, and that if the disease is rare or very rare, it is still life that is precious.
This positive outlook is a typical miracle of love. It is love that does this: it knows how to see good even in a negative situation, it knows how to keep the little flame alight in the middle of a dark night.
And love does another miracle: it helps us to remain open to others, able to share, to be in solidarity even when we may be suffering from a sickness or a heavy condition, worn out by everyday life.
I believe that from this same attitude, for which I thank God, the 700-kilometre race was born. You started ten days ago from your home and arrived today in Rome. A race for life and hope. I congratulate all those who gave life to this Race of the Rare Words along with all those who cooperated with you.
Thank you again. I will pray for you and your association. And you too, please, pray for me. Thank you.
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