Sma, the story of Noemi. The father: “They gave her 3 months to live, today she is 12 years old”

From the loneliness of the family, after the diagnosis, to the life plan

ROME – “Dama was born from testimonies, from the ability to listen to the needs and requirements of people with disabilities. I became Noemi’s father at 24 years old, after two years she was diagnosed with Sma and from there our life changed. We learned what it means to take care of a person with disabilities, we found ourselves alone in our region, Abruzzo, without adequate structures that could take care of us. of our daughter. We learned that disability can also mean induced poverty because my wife had to leave her job to take care of our daughter and my contract was not renewed because I asked for 104″. It is the story of Andrea, father of a girl who is now 12 years old and who, at the time of diagnosis, was only given three months to live. Andrea told his story during the conference ‘Life project and taking charge of the person in the context of hospital care: Dama and territory model‘, which took place this morning in Rome at the Hall of parliamentary groups.

In 2013, Andrea and his wife decided to create ‘Progetto Noemi‘, to represent the needs of families with very serious disabilities, through the development of social projects aimed at supporting the little ones in every aspect patients with serious illnesses, family members, caregivers and health assistants. “The Association acts driven by the belief that sharing and union can make a difference”, said Andrea. Thanks to ‘Progetto Noemi’ many things have changed in the family’s area of residence and today Andrea says: “Noemi has transformed the word Sma into Senza Mai Giving Up”.

ADVANCED MEDICAL ASSISTANCE OF PEOPLE WITH DISABILITIES

His is one of the testimonies that alternated during the conference precisely to underline the importance of advanced medical assistance for people with disabilities. The challenge of supporting health was the central theme of the morning. The hospital reception model for people with disabilities, developed by the Dama (Disabled Advanced Medical Assistance) project, was born in 2000 at the San Paolo Hospital in Milan thanks to Filippo Ghelma strong>, doctor from San Paolo and researcher at the State University, at the Department of Health Sciences. The Dama project represents a model of reception and inclusion born in response to the requests of families with people with disabilities, who felt in their daily lives the difficulty of the hospital structure in guaranteeing healthcare equal to that offered to people without disabilities. Today the project has become more popular and there are several examples in Italy but there is still a lot to do.

“Let us remember that people do things and therefore each of us can do something in the right direction – said Ghlema as he concluded the conference – problems are solved if they are known and therefore the first step it is information even before training. Let’s not set limits for ourselves: let’s imagine and plan in a free and imaginative way and let’s be courageous, this is one of the lessons I got from the Dama project. We must each commit ourselves in our own field but with a view to harmonious and network design“.