SAPRE and SMA1

SAPRE – Servizio di Abilitazione Precoce dei Genitori – stems from the common needs of parents and practitioners to give an effective and practical help to families of infants and children who experience a diagnosis of serious debilitating diseases and often poor prognosis. It is a service of the NHS which is accessed free of charge, with health card. It is a qualified centre, born as part of the Fondazione Ospedale Maggiore Policlinico Mangiagalli Regina Elena of Milan.
One of the diseases referred to SAPRE is Spinal Muscular Atrophy (SMA) type 1, also known as Werdnig-Hoffmann syndrome, hereditary genetic disease that causes a severe hypotonia in the infant, fast-changing according to the period of early onset of symptoms. With a practical and complete training the answers to questions that arise in the face of this serious disease are given to the parents, usually explained in a concise manner when SMA is diagnosed in the hospitals throughout the country.

In SMA1 the speed in arriving at an education as that offered by SAPRE becomes crucial, in order to develop the skills needed to manage daily life in every kind of situation, the normal practice and the emergency. The ability to assess and monitor the health of children and to manage with manual operations and the most appropriate instrument to preserve the best condition of prosperity are given to parents: correct posture of the child (in order to obtain a better ventilation and a proper physical development), how to handle food, daily care, the bath, the outputs, how to manage the relationship with the operators of the National Health Service in their places of belonging.
The early training of parents is offered in full compliance with the wishes of parents and family. Being able to detect the signs and intervene in time in critical situations improves the family and goes to reinforce the parental role and knowledge of the disease. The contact between parents and SAPRE is maintained over time, to offer solutions and recommendations in tandem with the disease. With professionalism and humanity, the parent is accompanied by the path of the illness of their child; the contact with other parents for mutual exchange of information is encouraged.

Contacts:

Fax: 02/501164
Phone 02/55400823
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Chiara Mastella
Phone 335/5793791 (24h)
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