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Lazzarich C
Emanuele, 10 years old. Autonomy in daily life for a person with Duchenne Muscular Dystrophy
Editorial data: Portale SIVA Fondazione Don Carlo Gnocchi Onlus
Abstract: Emanuele is a child, aged 10, suffering from progressive muscular dystrophy type Duchenne. He lives with his mother, a physiotherapist, that until now has coordinated on her own all professional interventions (physicians, pediatric neurology, pulmonologist, cardiologist, orthopedic technicians, etc..), as a response to the needs of her son. Now Emanuele’s mother is no more able to manage the situation by herself, as it has turned more difficult. We intervened in order to try to support her, focusing on five major issues concerning the autonomy of her son: the power wheelchair, the renovation of the bathroom, the accessibility of the home garden, the environment control and accessibility to personal computer. For each topic a specific project was formulated, each identifying needs, objectives and expected results.
Year of publication: 2006
Type of document: Case studies/experiences
Last update: May 2016
Robol E
Paoletto, 14 years old. Autonomy in daily life for a person with Menkes disease
Editorial data: Portale SIVA FondazioneDon Carlo Gnocchi
Abstract: Paoletto today is 14 years old and from his birth is affected by Menkes disease, a rare genetic disease and rapidly progressive. The genetic alteration results in a lack of intestinal absorption and intracellular transport of copper (coenzyme essential to man, especially during the growth and neuromotor development) that leads to a serious damage at neurological, visceral and musculoskeletal levels. Our rehabilitation services started during his first month of life, adopting an integrated approach (neuromotor and speech therapy). The areas of intervention have focused on internal and external mobility (including access to the garden), accessibility to transportation, personal care, posture, e-accessibility and writing, interpersonal communication, integrations of AT within the educational pathways.
Year of publication: 2008
Type of document: Case studies/experiences
Last update: July 2011
Info updated 17/04/2024 | Fondazione Don Carlo Gnocchi Onlus - P.IVA 12520870150 | E-mail: portale@siva.it