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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

Letter to students from Prof Jonathan Jansen about student protest action at the UFS
2015-10-21

Dear Students

Student protest action at the University of the Free State

I wish to make clear that the senior leadership of the University of the Free State understands and supports the demands from students and their leaders that higher education be accessible to all students, especially the poor. For the past six years we have done everything in our power to meet that commitment to students who are academically talented, but simply cannot afford to pay; that is why our tuition fees remain among the lowest in the country. Our efforts to raise private funding have enabled thousands more students to study at the UFS than would have been possible on the government subsidy only. Whether it is the Staff Fund contributions (yes, our staff empty their pockets to support student fees) or the No Student Hungry (NSH) bursary programme (yes, we raise funds for food bursaries), we will continue our drive to fund students who cannot afford higher education. Let me repeat, no student with a solid academic record will be denied access to studies simply because they cannot pay.

Now, to the matter at hand. There is a national demand from students for a 0% fee increment for 2016. The Minister’s response, after consultation with stakeholders, was that universities should cap their 2016 fee increases at 6%. Despite this initiative from government, the protests continue on virtually all campuses across South Africa for the ‘no fee’ increase.

Our response, as the UFS leadership, is to continue engaging the SRC as the chosen leadership of our students in trying to negotiate a settlement on the matter. We have worked around the clock to be available to student leaders to find some resolution on 2016 fees. While we understand the demands of students, as university leaders, we can only work with the government subsidy we receive. Any agreement reached, cannot and must not place the university at academic and financial risk in its ability to deliver public higher education to the country - if that happens, everybody loses. Still, no matter what happens in terms of the response from government, the leadership door at the UFS remains open to finding a mutually acceptable solution to all parties in these deliberations.

Students, we are deeply concerned by the violence, intimidation and threats from the small group of protesting students. These dangerous and demeaning behaviours, like disrupting classes and verbally abusing students and staff, undermine the legitimate quest of students for relief concerning tuition fees. Such behaviour is completely unacceptable and the university will take action where required. We must also remember that we have an obligation to all 30 000 students whose right to learn without fear of violence and intimidation must be respected.

In conclusion, over the past few years we have worked hard to build a culture of mutual respect and embrace as we worked through some very difficult challenges on campus. You would have noticed that the university leadership responded quickly and sympathetically to reason and respect in difficult situations of rage and demonstration. A minority of students, with some outsiders, have come onto the campus to break down that culture in which, while we might disagree, we continue to work on the basis of mutual respect. I urge all students that, as we engage of this important problem of enabling greater access to higher education, we continue to remain true to the core values of our Human Project.

Best Regards

Prof Jonathan Jansen
Vice-Chancellor and Rector
University of the Free State


Letter to students from Prof Jonathan Jansen about student protest actions at the UFS (Pdf format)

 

 

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