Educational needs of children with rare diseases and long-term home ventilation (SMARD1) - case study

Abstract

Diagnosing a child with a rare disease that involves acute respiratory distress dramatically changes his/ her educational situation. Therefore, it is important to determine the child’s educational needs which will help select an adequate teaching strategy. One of such diseases is Spinal Muscular Atrophy with Respiratory Distress Type 1 (SMARD1). In Poland, two children were diagnosed with it, whereas around the world there are over 60 cases. The study encompasses one boy with SMARD1. The purpose of the study was to describe the child’s educational needs, as well as to indicate which of them are related to the rare disease and which to respiratory distress that requires mechanical ventilation. Based on the performed study, it was concluded that not all educational needs related to the rare disease were present. On the other hand, all needs related to home ventilation were present.