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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 on cactus pear grabs attention of food, cosmetic and medical industry
2015-02-18

Cactus pear
Photo: Charl Devenish

The dedicated research and development programme at the UFS on spineless cactus pear (Opuntia ficus-indica) – also known as prickly pear – has grown steadily in both vision and dimension during the past 15 years. Formal cactus pear research at the UFS started with the formation of the Prickly Pear Working Group (PPWG) in June 2002. It has since gone from strength to strength with several MSc dissertations and a PhD thesis as well as popular and scientific publications flowing from this initiative.

According to Prof Wijnand Swart from the Department of Plant Sciences, the UFS is today recognised as a leading institution in the world conducting multi-disciplinary research on spineless cactus pear.

Cactus pear for animal feed

Increasing demands on already scarce water resources in South Africa require alternative sources of animal feed – specifically crops that are more efficient users of water. One alternative with the potential for widespread production is spineless cactus pear. It is 1.14 x more efficient in its use of water than Old man saltbush, 2.8 x more efficient than wheat, 3.75 x more efficient than lucerne and 7.5 x more efficient than rangeland vegetation.

“Studies on the use of sun-dried cactus pear cladodes suggest that it has the potential to provide some 25% of the basic feed resources required by South Africa’s commercial ruminant feed manufacturing sector,” says Prof HO de Waal of the Department of Animal, Wildlife and Grassland Sciences at the UFS.

Until recently, research has focused extensively on the use of cactus pear as drought fodder. However, this is now beginning to shift, with growing interest in the intensive production of spineless cactus pear for other types of animal feed. One example is the spineless cactus pear fruit, produced seasonal, yielding large quantities of fruit in a relatively short period of a few months in summer. Unless kept in cold storage, the fruit cannot be stored for a long period. Therefore, a procedure was developed to combine large volumes of mashed cactus pear fruit with dry hay and straw and preserve it for longer periods as high moisture livestock feed, kuilmoes – a high water content livestock feed similar to silage.

Cactus pear and Pineapple juice
Photo: Charl Devenish

Cactus pear for human consumption

“In addition to its use as a livestock feed, cactus pear is increasingly being cultivated for human consumption. Although the plant can be consumed fresh as a juice or vegetable, significant value can be added through processing. This potential is considerable: the plant can be pickled; preserved as a jam or marmalade; or dried and milled to produce baking flour. It can also serve as a replacement of egg and fat in mayonnaise,” said Dr Maryna de Wit from the Department of Microbial, Biochemical and Food Biotechnology.

The extraction of mucilage from fresh cladodes can form a gelling, emulsifier, and fat-replacing agent commonly found in food products such as mayonnaise and candy. During an information session to the media Dr De Wit and her team conducted a food demonstration to showcase the use of the cladodes in a juice, chicken stir-fry, biscuits and a salad.

The extrusion of cactus pear seed oil provides a further lucrative niche product to the array of uses. These include high-value organic oil for the cosmetic sector, such as soap, hair gel and sun screens.

The cladodes and the fruit also have medicinal uses. It has anti-viral, anti-inflammatory, pain killing and anti-diabetic agents. It is also high in fibre and can lower cholesterol. The fruit also prevents proliferation of cells and suppresses tumour growth and can even help to reduce a hangover.

In South Africa the outdated perception of cactus pears as thorny, alien invaders, is rapidly disappearing. Instead, farmers now recognise that cactus pear can play a vital role as a high yielding, water-efficient, multi-use crop, said Prof de Waal and the members of the Cactus Pear Team.

Facebook photo gallery
Dagbreek interview with Dr Maryna de Wit  

Research on cactus pear (read the full story)

For more information or enquiries contact news@ufs.ac.za

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