Matteo’s Story – Care Beyond Cure

Care Beyond Cure – Ondine’s Syndrome

“One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children born with Ondines syndrome do not have the cerebral impulse to breath.” Antonella Zamboni, Matteo’s Adoped Mother.

“The idea that these children cannot reach adulthood, from a human point of view is unacceptable. If you manage to get them to realize what the situation is, I think that no one can stop from developing palliative care in their country.” Silvia Lefebvre D’Ovidio, Maruzza Lefebvre D’Ovidio Foundation, Italy

“We all have very different cultures, resources, experiences.” Explains Dr Franca Benini, Matteo’s Palliative Care Doctor. “Therefore to be able to choose how and where to receive care throughout the illness and death I think is one of the main aspects that we must guarantee to these children and their families.”

‘Palliative care for children cannot be something that happens because there is a volunteer person who’s working in it, it should be a right, and to make sure this right is taken seriously it has to be recognized by the government.” Silvia Lefebvre D’Ovidio

“My name is Matteo, I am nine years old. My tracheo helps me to breath and to be well”

“When he was only a couple of months old we realized that Matteo had a serious problem; he was diagnosed with Ondine’s Syndrome… He had to be ventilated continuously … he was in the neonatal ICU….he had to undergo a tracheostomy. As a baby he was very difficult to manage.” Explains Dr Benini “The first thing his foster mum Antonella did, regardless of his condition, was to take him into her arms and say ‘this one needs to be mine’.”