“A four month old baby, sweet, plump and as beautiful as an angel, is suffering from a life-limiting disease, which in a few days will take him away. There are not enough tears to mourn such a loss, but it is possible to help children and adults with chronic or incurable diseases have a better quality of life,a possibility which affords them respect and dignity; this possibility is Palliative Care. It is not a fraud, a placebo or an illusion; it is a right,and one that invests our civilization with meaning.”
These are the words of Silvia Lefebvre D’Ovidio of the Maruzza Foundation, whose mission is to increase the knowledge and awareness of paediatric palliative care.
Her strategy includes urging governments to implement healthcare policies inclusive of palliative care, thus improving the quality of life for children suffering from life-threatening and life-limiting diseases.
When ZENIT interviewed D’Ovidio, she explained: “We want to improve the knowledge and the application of palliative care. We want to focus on the needs of people who are ill – be it a child, an adult, or the elderly – and their families, and not solely on the disease that has hit them. We want to provide the chronically and terminally ill dignity and respect.”
“We want to ensure that every child is in her playroom,or attending her birthday party, with her classmates; we want to ensure that every parent can live a life which is not completely circumscribed by the illness of his or her child; we want to make sure that the elderly are taken care of because man does not lose value due to illness or infirmity.This is a fundamental expression of humanity.”
The Foundation Maruzza Lefebvre D’Ovidio Onlus is a non-profit organization created by Antonio and Eugenia Lefebvre D’Ovidio on October 7, 1999, in memory of their daughter, Maruzza, who died of cancer. The Foundation has worked for 16 years in the palliative care field to ensure that the most vulnerable members of our society – children and the elderly -have the best possible quality of life in spite of their illnesses, including the right to be treated by medical personnel who have been well trained in the field.
The Foundation is working not only in Italy, but also at a global level, and this year has organized an important international event:
The international workshop, “Defining the Essence of Palliative Care for Children,” will take place Tuesday at the headquarters of the Pontifical Academy for Life in Rome, just a few steps from St. Peter’s Basilica.
The event will be opened by Monsignor Ignacio Carrasco de Paula, and will bring together experts in paediatric palliative care, theologians from the world’s main faiths, leaders in communications, experts in human rights, and paediatric patients and their families.
The workshop’s participants will be organized into four groups that will work simultaneously: luminaries and experts on palliative medicine from around the world will confer on technical aspects; representatives of international organizations and human rights groups will research human rights aspects; the members of the world’s main faiths will explore spirituality and religion; paediatric patients and families with direct experience of paediatric palliative care will discuss the fundamental need for this type of medicine.According to Silvia Lefebvre D’Ovidio, “One of the primary aspirations of all Religions is the protection of the most vulnerable, and their moral authority has global reach.”
“Our desire,” she said, “is that the participants of the workshop unanimously establish the importance of paediatric palliative care. This will be done by discussing, composing and undersigning a charter in which the chronically and terminally ill, who are often marginalized and vulnerable, are afforded compassion and respect, regardless of their illnesses, thus safeguarding the dignity of their entire family. “
Silvia wrote in a letter to Pope Francis: “Incurable children are among the most vulnerable people on earth. They live for very few or very many years, and their families can become very fragile as a consequence. They need all our help and support. (…) The meeting on November 10th is dedicated to them. Our aim is to deliver a Charter that will help the representatives of all religions to convey to children suffering from incurable disease and their families, everywhere,the validity and importance of palliative care. Ensuring the quality and dignity of life until the last moment is our desired goal, but at the spiritual core of our mission are the children and their families.”
It is estimated that almost 20 million families have children affected by incurable disease.
The charter will be officially presented at a press conference scheduled for Wednesday, November 11th, at 11:30 in the Marconi Room of Vatican Radio.
On the Net:
Information on the Foundation, on Palliative Care, or on the Workshop’s program: www.maruzza.org
E mail: [email protected]