The latest Little Stars short film features Matteo a 9-year-old boy living in Veneto, Italy. He has Ondines syndrome, which means that he does not have the cerebral impulse to breathe. Matteo is supported by a very dense network of healthcare workers that address his diverse needs.
“When he was only a couple of months old we realised 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 Franca Benini, his palliative care doctor. She recalls, “The first thing that his foster mum, Antonella Zamboni, did was to take him into her arms and say ‘this one needs to be mine’.”
Antonella says, “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.”
“I must say that both the support of the children’s hospice and Dr Benini’s palliative care team have been fundamental to us. For us as a family it was vital to have someone there. To know that there was an expert on hand round the clock to answer our question and support us,” Antonella tells us.
“The people managing these services are all professionals from the children’s hospice who all know Matteo and his family and have an excellent rapport with them,” says Dr Benini.
Silvia Lefebvre D’Ovidio, chair of the Maruzza Foundation based in Rome, Italy, has this to say: “The idea that these children cannot reach adulthood, from a human point of view is unacceptable. If you manage to get them to realise what the situation is, I think that no one can stop from developing palliative care in their country. 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 recognised by the government.”
We will let Matteo have the final words: “My name is Matteo, I am nine years old. I have a tracheo. It helps me to breath and to be well.”
Featured in this latest Little Stars film are:
Antonella Zamboni, Matteo’s adopted mother
Silvia Lefebvre D’Ovidio, Chair of the Maruzza Foundation
Dr Franca Benini, Matteo’s palliative care doctor