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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

NRF grants of millions for Kovsie professors
2013-05-20

 

Prof Martin Ntwaeaborwa (left) and Prof Bennie Viljoen
20 May 2013


Two professors received research grants from the National Research Foundation (NRF). The money will be used for the purchase of equipment to add more value to their research and take the university further in specific research fields.

Prof Martin Ntwaeaborwa from the Department of Physics has received a R10 million award, following a successful application to the National Nanotechnology Equipment Programme (NNEP) of the NRF for a high-resolution field emission scanning electron microscope (SEM) with integrated cathodoluminescence (CL) and energy dispersive X-ray spectrometers (EDS).

Prof Bennie Viljoen from the Department of Microbial, Biochemical and Food Biotechnology has also been awarded R1,171 million, following a successful application to the Research Infrastructure Support Programme (RISP) for the purchase of a LECO CHN628 Series Elemental Analyser with a Sulphur add-on module.

Prof Ntwaeaborwa says the SEM-CL-EDS’ state-of-the art equipment combines three different techniques in one and it is capable of analysing a variety of materials ranging from bulk to individual nanoparticles. This combination is the first of its kind in Africa. This equipment is specifically designed for nanotechnology and can analyse particles as small as 5nm in diameter, a scale which the old tungsten SEM at the Centre of Microscopy cannot achieve.

The equipment will be used to simultaneously analyse the shapes and sizes of submicron particles, chemical composition and cathodoluminescence properties of materials. The SEM-CL-EDS is a multi-user facility and it will be used for multi- and interdisciplinary research involving physics, chemistry, materials science, life sciences and geological sciences. It will be housed at the Centre of Microscopy.
“I have no doubt that this equipment is going to give our university a great leap forward in research in the fields of electron microscopy and cathodoluminescence,” Prof Ntwaeaborwa said.

Prof Viljoen says the analyser is used to determine nitrogen, carbon/nitrogen, and carbon/hydrogen/nitrogen in organic matrices. The instrument utilises a combustion technique and provides a result within 4,5 minutes for all the elements being determined. In addition to the above, the machine also offers a sulphur add-on module which provides sulphur analysis for any element combination. The CHN 628 S module is specifically designed to determine the sulphur content in a wide variety of organic materials such as coal and fuel oils, as well as some inorganic materials such as soil, cement and limestone.

The necessity of environmental protection has stimulated the development of various methods, allowing the determination of different pollutants in the natural environment, including methods for determining inorganic nitrogen ions, carbon and sulphur. Many of the methods used so far have proven insufficiently sensitive, selective or inaccurate. The availability of the LECO analyser in a research programme on environmental pollution/ food security will facilitate accurate and rapid quantification of these elements. Ions in water, waste water, air, food products and other complex matrix samples have become a major problem and studies are showing that these pollutants are likely to cause severe declines in native plant communities and eventually food security.

“With the addition of the analyser, we will be able to identify these polluted areas, including air, water and land pollution, in an attempt to enhance food security,” Viljoen said. “Excess levels of nitrogen and phosphorous wreaking havoc on human health and food security, will be investigated.”

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