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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

Research into veld fires in grassland can now help with scientifically-grounded evidence
2015-04-10

While cattle and game farmers are rejoicing in the recent rains which large areas of the country received in the past growing season, an expert from the University of the Free State’s Department of Animal, Wildlife, and Grassland Sciences, says that much of the highly inflammable material now available could lead to large-scale veld fires this coming winter.

Prof Hennie Snyman, professor and  researcher in the Department of Animal, Wildlife, and Grassland Sciences, warns that cattle and game farmers should be aware, in good time, of this problem which is about to rear its head. He proposes that farmers must burn firebreaks as a precaution.

At present, Prof Snyman focuses his research on the impact of fire and burning on the functioning of the grassland ecosystem, especially in the drier grassland regions.

He says the impact of fire on the functioning of ecosystems in the ‘sour’ grassland areas of Southern Africa (which includes Kwazulu-Natal, Limpopo, Mpumalanga, the Eastern Cape, and the Harrismith environs) is already well established, but less information  is available for ‘sweet’ semi-arid grassland areas. According to Prof Snyman, there is no reason to burn grassland in this semi-arid area. Grazing by animals can be effectively used because of the high quality material without having to burn it off. In the sourer pasturage, fire may well form part of the functioning of the grassland ecosystem in view of the fact that a quality problem might develop after which the grass must rejuvenate by letting it burn.

Prof Snyman, who has already been busy with the research for ten years, says quantified data on the impact of fire on the soil and plants were not available previously for the semi-arid grassland areas. Fires start frequently because of lightning, carelessness, freak accidents, or damaged power lines, and farmers must be recompensed for this damage.

The shortage of proper research on the impact of fires on soil and plants has led to burnt areas not being withdrawn from grazing for long enough. The lack of information has also led to farmers, who have lost grazing to fires, not being compensated fairly or even being over-compensated.

“When above-and below-ground plant production, together with efficient water usage, is taken into account, burnt grassland requires at least two full growing seasons to recover completely.”       

Prof Snyman says farmers frequently make the mistake of allowing animals to graze on burnt grassland as soon as it begins to sprout, causing considerable damage to the plants.

“Plant roots are more sensitive to fire than the above-ground plant material. This is the reason why seasonal above-ground production losses from fire in the first growing season after the fire can amount to half of the unburnt veld. The ecosystem must first recover completely in order to be productive and sustainable again for the long term. The faster burnt veld is grazed again, the longer the ecosystem takes to recover completely, lengthening the problem with fodder shortages further.  

Prof Snyman feels that fire as a management tool in semi-arid grassland is questionable if there is no specific purpose for it, as it can increase ecological and financial risk management in the short term.

Prof Snyman says more research is needed to quantify the impact of runaway fires on both grassland plant productivity and soil properties in terms of different seasonal climatic variations.

“The current information may already serve as valuable guidelines regarding claims arising from unforeseen fires, which often amount to thousands of rand, and are sometimes based on unscientific evidence.”

Prof Snyman’s research findings have been used successfully as guidelines for compensation aspects in several court cases.

 

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