In Italy, 11,000 children suffer from rare, serious illnesses, rare because they afflict less than 1 child in 2,000. Symptoms appear in the first months of life, often afflicting multiple organ systems, creating numerous complex serious chronic problems, which cannot be cured but can be treated.
These are exceptional children with exceptional needs, and so their medical and psychological care must also be exceptional. Their life, largely in the hospital, is also exceptional.
For a child with a rare illness, a hospital bed is much more than a bed. It is a place where treatment is unique and personalized, and where medicine and technology team up with a love for life.
These children are often unable to move, see, understand speech, or breathe. Their bodies cannot defend them against infections.
They need respirators, feeding tubes, constant specialized medical attention, periodic check-ins. And when at home, they must be continually observed, so the hospital needs to come with them, bringing its professional know-how and its ability to promptly intervene in case of need.
The Buzzi Hospital ICU admitted over 150 children, from all over Italy, in the last year. These are exceptional children, affected by incurable diseases, by serious disability with “life-limiting conditions”, and therefore they need palliative pediatric care.
They are fragile, as too their families can be from spending large parts of their life in the ho-spital. Once at home, mothers, fathers, grandparents, and siblings are all called to act as doc-tors, nurses, and physical therapists to assist them. But regardless of illness, they need to be able to stay at home, to live – even with difficulty – their life among friends and relatives.
Our mission is to help them even at home.
Therefore, the Buzzi Foundation – thanks to the support of the Milan Community Foundation – has kicked off an experimental project for the 50 young patients living in Milan. The Buzzi Foundation aims to have the hospital arrive at these children’s homes, giving the young patients free quality care surrounded by family in the comfort of their home.
For them, the Buzzi Foundation has developed a series of activities to complement and refine the plan of intervention created by the Buzzi Hospital to support these exceptional patients.
A team consisting of nurses and physical therapists who periodically make house calls, and a tablet the family can use to communicate with Buzzi Hospital’s ICU doctors and nurses. Older children can talk to doctors every day, relating their symptoms, needs, and challenges. Pa-rents can ask for advice, suggestions, or immediate intervention in case of emergency.
Our doctors, then, become much more than just doctors: they becoming traveling companions, friends during tough times, walking side by side with patients within the walls of their homes.
Buzzi’s intervention model for kids and parents is excellence at a regional level:
- 24-hour hotline
- Personal case manager
- Clinic for Pediatric Palliative Care and for serious chronic pain
- Outpatient hospital and clinic for short stays
- Rapid imaging and respiratory analysis
- Personalized medical treatment Multidisciplinary consultation (cardiology, neurology, pedia-tric surgery, pediatrics, psychology…)
- Counseling for parents and family doctors
Assistance to the Buzzi Foundation’s “The hospital comes to your house” project will help:
- support the care given at home by multidisciplinary teams composed of nurses and a physical therapist who make periodic house calls;
- give the case manager, a critical care specialist who keeps tabs on all children at home and monitors their health, a central computer to be able to monitor care given at home;
- donate 50 tablets to the children in the project so they can communicate directly with the hospital.
Any donation, no matter how small, will help support the work of the multidisciplinary team once the experimental phase of the project is complete.
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