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’.”
Matteo is supported by a very dense network of healthcare workers that address his diverse needs.
“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 and excellent rapport with them.” Dr Banini.
Please consider supporting the important work of the Maruzza Foundation at Maruzza.org/en/help-us
– Antonella Zamboni, Matteo’s Adoped Mother
– Silvia Lefebvre D’Ovidio, Maruzza Lefebvre D’Ovidio Foundation
– Dr Franca Benini, Matteo’s Palliative Care Doctor
This week we are pleased to be supporting the release of a short film that encourages sharing skills and knowledge of children’s palliative care internationally. This film explains what we can learn together by international linking and...read more
Hope and Hyperinsulinism in infants “Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother....read more
Thriving with Thalassemia Major "I believe it's the quality of life, it doesn't matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want...read more
"Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing." Gail Featherstone, Wife of the...read more
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring. Marmaduke’s Story highlights...read more
"The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad. What they may not understand is that clearly using palliative care means that kids actually...read more
“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with ” Natasha Samy, Social Worker & Bereavement Counsellor. This short film tells the story of...read more
“Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting conditions It’s holistic, looking at the body, mind and spirit within the social and cultural...read more