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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability. 

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential. 

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context. 

 

Empowering programme 

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.  

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says. 

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains. 

 

Feedback from parents 

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do …  she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.   

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before …  as a mother of a Down syndrome baby – but for any mother …  I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot …  my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …” 

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.  

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq. 

News Archive

Mellon Foundation awards R10 million research grant to Trauma, Forgiveness and Reconciliation Studies
2015-02-20

Prof Pumla Gobodo-Madikizela, Senior Research Professor in Trauma, Forgiveness and Reconciliation Studies, and Dr Saleem Badat, Programme Director at the Mellon Foundation.
Photo: Johan Roux

Through her profound insight, vast experience, and unfaltering belief in humanity, Prof Pumla Gobodo-Madikizela, has secured a R10 million grant from one of the world’s most prestigious foundations funding human sciences research.

“This is one of the biggest grants that the Andrew W. Mellon Foundation has awarded to a university”, said Dr Saleem Badat, Program Director: International Higher Education and Strategic Projects at the Mellon Foundation. Prof Badat attended the press event that took place on 16 February 2015 on our Bloemfontein Campus.

UFS Trauma, Forgiveness, and Reconciliation Studies, spearheaded by Prof Gobodo-Madikizela, will manage the research project.

Prof Jonathan Jansen, Vice-Chancellor and Rector of the UFS, expressed great excitement “about this particular grant and the subject on which it focuses is so incredibly timely and germane to our own situation.”

Trauma, Memory and Representations of the Past: Transforming Scholarship in the Humanities and Arts

This new-found partnership between the Mellon Foundation and the UFS will enable a five-year research programme. The focus area of this initiative will be ‘Trauma, Memory and Representations of the Past: Transforming Scholarship in the Humanities and Arts’.

The research will pivot specifically around the question of how trauma is transmitted from one generation to the next. “South Africa lends itself to these questions,” Prof Gobodo-Madikizela said, “because we are now dealing with a generation of young people who were born after the traumas of the past.” These past experiences, though, are “passed on to the younger generation and become their own stories and narratives as if they themselves experienced the traumas directly.”

“This is an investment in how we can in fact create a different kind of community,” Prof Jansen said, “in which we eventually recognise each other – not by the accident of our skin, but by that elusive sense of a common humanity.”

Arts and theatre

Other aspects critical to this study are the inclusion of the arts and theatre. Many people have great difficulty in expressing their experiences of trauma in the spoken word. The arts and theatre provide an ideal platform to engage the public and stimulate conversation. As an example of the power these platforms possess, Prof Gobodo-Madikizela highlighted the success of the Johannes Stegmann Art Gallery – situated on the Bloemfontein Campus and curated by Angela de Jesus – in engaging the public in very productive ways.

Participants

Some of the artists, directors and scholars who will join in this project include:

• Lara Foot-Newton, Director/Playwright
• Sue Williamson, Activist Artist
• Angela de Jesus, Visual Artist/Curator
• Dr Buhle Zuma, Social Psychology Research
• Dr Shose Khessi, Social Psychology Research
• Prof Tamara Shefer, Women’s and Gender Studies
• Prof Kopano Ratele, Gender/Men and Masculinities
• Prof Jan Coetzee, Sociology of Developing Societies
• Prof Helene Strauss, Literary and Cultural Studies

New intellectual frontiers

“There is an aspiration in this proposal,” Dr Saleem Badat said. “We were born through this pain of colonialism and apartheid; we even went through the TRC. Our scholars in this country, our universities, should be at the forefront of this research. This is not research we can leave to the institutions in the north.”

Prof Gobodo-Madikizela agreed. “The overarching theme of this work is new knowledge production, focusing on the experiences in South Africa as experiences that can teach us something new.”

This will serve not only South Africa, but can also establish support for, and inform, countries facing similar dilemmas. In fact, “any part of the world in which genocide and murder and racism remains as legacies from the past,” Dr Badat said.

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