Introduction

The purpose of this handbook is to inform teachers and school administrators about Barth syndrome (BTHS) and how they can best advocate for a student with BTHS in the educational environment. 

Two handbooks have been created. One handbook has been written for the parents of students who live with BTHS, and another handbook has been written for educators of a child with BTHS. Each of these resources represents the collective wisdom, knowledge, and stories of the families and educators who have worked closely with students diagnosed with BTHS. It is the hope of the Barth Syndrome Foundation (BSF) that these handbooks will help families and educators to manage the child’s educational journey with less anxiety, more happiness, and greater success.

Both of these handbooks are living documents which have been updated many times over since 2003. The credit for the original research and writing, on which this project rests, goes to expert Jon Rosenshine, M.A, M.Ed., with very helpful input from Eileen Juico, M.A., M.Ed., Joan Stoner, Ed.D., Jaclyn Butera, M.S.W., C.S.W., M.Ed., Jules Spotts, Ph.D., P.C., Raghad Schroeder, O.T.R./L and Paula Geigle, P.T., Ph.D. The Barth Syndrome Foundation is very grateful for dedication of these professionals in devoting their time and expertise to our cause. It is through their guidance that parents and teachers have this invaluable resource to make school a success for those who have BTHS.

As part of the initial research for this handbook, a number of Barth Syndrome Foundation families were surveyed about their experiences in the education with their children who live with BTHS.

Some important patterns in Barth syndrome (BTHS) students’ experiences emerged from the research.

• Every individual who has BTHS lives with daily fatigue. The degree of fatigue is highly variable but nevertheless debilitating
• Each individual who has BTHS must deal with the social challenge of not only feeling different but also being perceived as different by his classmates. Almost all students with BTHS must have some form of adjusted academic schedule with adjusted expectations from the normal curricular guidelines. Otherwise, they simply could not be expected to keep up.

The greatest educational obstacle facing students who live with BTHS is their serious medical condition, but the greatest cause of educational stress for these students comes from their schools’ not understanding how BTHS affects them. BTHS is a rare and complicated condition, so it is entirely understandable that most educators have no idea what it is.

One way of looking at the current situation for students with BTHS is they are often square pegs being fit into round holes. BTHS manifests itself so differently from other illnesses, and indeed from individual-to-individual. Parents often simply try to find educational solutions where their child(ren) can comfortably fit. With parents and educators working together and with this handbook and the resources it offers, BSF hopes to give educators what they need to help guide a student with BTHS through his education with the care and support that every individual deserves.