Supporting a Tsonga learner living with Bardet-Biedl syndrome, a rare complex disability

Area of Science:

• Pediatric Genetics
• Special Education
• Clinical Psychology

Background:

• Bardet-Biedl syndrome (BBS) is a rare genetic disorder causing obesity, polydactyly, vision/hearing loss, and cognitive impairment.
• Educating children with BBS presents significant challenges due to their complex, chronic health conditions.

Purpose of the Study:

• To explore the psycho-educational support needs of a child with BBS in South Africa.
• To inform early detection and holistic intervention strategies for BBS.

Main Methods:

• A descriptive, in-depth qualitative case study was conducted.
• Data collection involved semi-structured interviews with parents and teachers, review of medical reports, and classroom observations.

Main Results:

• Gezani's cognitive disability necessitated a modified, slow-paced curriculum.
• Visual impairment required orientation training and Braille instruction.
• Psychotherapy addressed emotional needs, while speech therapy improved communication; medical monitoring and dietary management were recommended.

Conclusions:

• Learners with multiple disabilities, like BBS, need individualized psycho-educational programs with targeted interventions.
• This study emphasizes the importance of multi-faceted support and alignment between special schools and national policies for children with complex disabilities.