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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

UFS’ position on student politics
2011-09-01

The University of the Free State (UFS) welcomes politics on its campus. It especially invites students to participate in all the political activities on campus, ranging from seminars and debates on national and provincial politics, and organization within party political structures. Earlier the year, in the run-up to the Local Government Elections, a programme was run on campus with all political parties participating in public and radio debates with students on political issues.

A university must be a place for all kinds of ideas and organizations---social, cultural, religious, academic and, yes, political. The perception that the UFS has “banned” politics is simply not true, nor is it possible within a constitutional democracy.
 
The University of the Free State once again invites SASCO and any other political groupings that have not yet registered to participate in campus life, to do so as soon as possible. It is important to the UFS that all student bodies enjoy full participation in campus life, and that there exists a vibrant and exciting political life on the campus alongside academic, social, cultural and religious life.
 
The Student Representative Council (SRC) Elections at the UFS has been constituted on independent candidacy and non-party-political basis. This is a decision crafted and recommended by the Broad Student Transformation Forum, whose members are elected by students, and approved for implementation by the highest authority of the university, the Council. The decisions of the Student Forum entails that all students can nominate individuals for a variety of student leadership positions, which includes nomination for elective portfolios in the SRC elections, but also within nine sub-councils that hold ex-officio seats on the SRC.
 
The old system which restricted student leadership to representation on a party-political basis only (DA, ANC, Freedom Front Plus etc) no longer exists.
 
This decision of the Student Forum ensures that the rights of all students to directly elect their representatives are protected, and that the SRC in fact represents the student body as a whole and not particular interest groups alone. This decision enables ALL students to stand for and participate in campus politics in the SRC elections, though not on a party political ticket. In the 2011 SRC Elections, for example, SASCO members were indeed mandated by its local branch to stand as candidates for various elected positions, as did other political parties such as the DA Student Organisation, a development which the university welcomes. 
 
Most importantly, the UFS insists that all students participate in university life with respect for the rights of all students, irrespective of their social beliefs or political commitments. The UFS insists that no student or student grouping acts to disrupt campus life or insult university staff or denigrate fellow students on grounds of race, religion, language, gender, etc. This is very important to the UFS as it works to build a non-racial culture that respects our common humanity. Our students must learn that democracy and decency go hand in hand, and that part of learning at a university, is to learn to differ without resorting to a language of derision.
 
In short, the University of the Free State warmly welcomes full participation in politics, as in other spheres of student life, on all three its campuses.
 
Statement by Prof. Jonathan Jansen, UFS Vice-Chancellor and Rector.

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