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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

Is milk really so well-known, asks UFS’s Prof. Osthoff
2011-03-17

Prof. Garry Osthoff
Photo: Stephen Collett

Prof. Garry Osthoff opened a whole new world of milk to the audience in his inaugural lecture, Milk: the well-known (?) food, in our Department of Microbial, Biochemical and Food Biotechnology of the Faculty of Natural and Agricultural Sciences.

Prof. Osthoff has done his research in protein chemistry, immuno-chemistry and enzymology at the Council for Scientific and Industrial Research (CSIR) in Pretoria and post-doctoral research at the Bowman-Grey School of Medicine, North Carolina, USA. That was instrumental in establishing food chemistry at the university.
 
He is involved in chemical aspects of food, with a focus on dairy science and technology. He is also involved in the research of cheese processing as well as milk evolution and concentrated on milk evolution in his lecture. Knowledge of milk from dairy animals alone does not provide all the explanations of milk as food.
 
Some aspects he highlighted in his lecture were that milk is the first food to be utilised by young mammals and that it is custom-designed for each species. “However, mankind is an opportunist and has found ways of easy access to food by the practice of agriculture, where plants as well as animals were employed or rather exploited,” he said.
 
The cow is the best-known milk producer, but environmental conditions forced man to select other animals. In spite of breeding selection, cattle seem not to have adapted to the most extreme conditions such as high altitudes with sub-freezing temperatures, deserts and marshes.
 
Prof. Osthoff said the consumption of the milk as an adult is not natural; neither is the consumption of milk across species. This practice of mankind may often have consequences, when signs of malnutrition or diseases are noticed. Two common problems are an allergy to milk and lactose intolerance.
 
Allergies are normally the result of an immune response of the consumer to the foreign proteins found in the milk. In some cases it might help to switch from one milk source to another, such as switching from cow’s milk to goat’s milk.
 
Prof. Osthoff said lactose intolerance – the inability of adult humans to digest lactose, the milk sugar – is natural, as adults lose that ability to digest lactose. The symptoms of the condition are stomach cramps and diarrhoea. This problem is mainly found in the warmer climates of the world. This could be an indication of early passive development of dairy technology. In these regions milk could not be stored in its fresh form, but in a fermented form, in which case the lactose was pre-digested by micro-organisms, and the human population never adapted to digesting lactose in adulthood.
 
According to Prof. Osthoff, it is basically the lactose in milk that has spurred dairy technology. Its fermentation has resulted in the development of yoghurts and all the cheeses that we know. In turn, the intolerance to lactose has spurred a further technological solution: lactose-free milk is currently produced by pre-digestion of lactose with enzymes.
 
It was realised that the milks and products from different species differed in quality aspects such as keeping properties and taste. It was also realised that the nutritional properties differed as well as their effects on health. One example is the mentioned allergy against cow’s milk proteins, which may be solved by the consumption of goat’s milk. The nutritional benefits and technological processing of milk aroused an interest in more information, and it was realised that the information gained from human milk and that of the few domesticated species do not provide a complete explanation of the properties of milk as food. Of the 250 species of milk which have been studied, only the milk of humans and a few domesticated dairy animals has been studied in detail.

Media Release
15 March 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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