Tackling the disease of a child is a constant suffering. This information hits you, bringing you from light heartedness to anxiety. Future programs and prospects seem aground; the shadow of uncertainty of precariousness covers everything. The daily life changes: trips, holidays, walks and sunny afternoons in the park give way to health consultations, analysis, diagnosis and therapies. The collateral risk is social isolation, a damage in the damage that aggravates the effects of the pathology. Because a sick child has not only the need to heal but also the right to live fully his own childhood, despite the difficulties that his condition entails. Needs that the parents understand but that often fail to answer: juggling between hospitals, work and other needs of the family – think of those who have more than one child – it is complicated. If you then live outside the city or in any case far from the few centres that carry out the treatments prescribed by paediatricians the picture becomes even more grey.
Tens of families in Italy live this condition. The world of volunteerism has created numerous realities to help and sustain them. Like the association “Andrea Tudisco” that since 1997 offers a home and a structure to accommodate the many families that need to go to Rome continually to allow their children to get cured, enduring a huge financial burden.
Everything is born from the activism of Fiorella Tosoni (today the president of the centre), her husband Nicola and from the memory of Andrea, their child, who tragically died at the age of ten for a lymphoblastic leukaemia. During the period of his sickness and hospitalization the parents have experienced the importance of solidarity between families, beginning to accommodate mothers and fathers away from home and forced to adapt and, often, to sleep on a chair of the hospital (or in the car) during the hospitalisation of their child. The experience of doing it once, has become a habit, then practice, now finally a network. The death of Andrea did not break the chain of solidarity. Fiorella and Nicola, despite their pain wanted to continue that experience, therefore they gathered together with a group of friends and have gone forward. In 2006, the Municipality of Rome has allocated them an abandoned structure in the Aurelio district, transformed, after the restructuring in the “House of Andrea“, the beating heart of the city centre.
In Terris has spoken with the President Fiorella Tosoni.
To whom is your project addressed?
“Families with children suffering from serious diseases that in order to treat their children are forced to leave their homes and which therefore are in need of welcome and hospitality. And to the sick and/or hospitalized child in general”.
Among the people welcomed are there also terminally ill?
“Yes. We are a support also when, fortunately increasingly rarely, it happens that one of our children fails to heal”.
What are the more common diseases among your little guests?
“Tumours, genetic malformations and cardiology”
How do you accompany a minor through the disease?
“Making him live as much as possible a daily life of play, study, creativity and fun”.
And parents toward the possible loss of a son?
“Respecting their pain, their anger, showing empathy and listening”
There is a different awareness about what is happening between small patients and parents. So, on the one hand there are children that need to live their own childhood even in conditions of difficulty, on the other hand parents who face this drama in a deeper and conscious way. How do you handle this situation?
“Dedicating different moments and spaces to both”
What are the therapies of psychological support that operate better in these cases?
“There is no preference. Any therapist uses the one that he masters better and that is most suitable for the individual case”.
On which sources of financing can you rely on to support your work? Can you can count on the support of the institutions?
“Unfortunately for our main activities (management of reception centres and clown therapy) there are no public funding. We are supported by Companies, Foundations, Schools, personalities from the world of entertainment, sport and people who believe in what we do.”
What are your next projects?
“To expand the offer of welcome because the demand is increasing. Activate the service of clown therapy in more paediatric departments but also in centres for fragile patients. Start a service to accompany the return at home for children and families that have been our guests in order to avoid the trigging of negative dynamics and the rise of psychological problems in the future “.
Today the association “Andrea Tudsico” welcomes 12 Families for as many sick children, the smallest is 18 months old, the eldest is 17 years old. Usually the patients live in the structure together with only one parent, but in case of special requirements, the centre is also open to the other family member. The volunteers follow guests from A to Z: they organise recreational workshops and activities, help them to continue their studies (the association relies on a nearby school and has made a request for access to home education service) and accompany them in the hospital. This allows children to receive the care in day hospital instead of in hospitalization, with an enormous cost saving for the national health system. In the centre, some operators tell us, there is a positive atmosphere, energetic. So much so that some of the people we welcomed, after healing, return or for the days required for check-ups or even simply to greet their friends. Now they are aware that the disease can be overcome also thanks to the unconditional love of a big family.