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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

#Women'sMonth: Save the children
2017-08-10

Description: Trudi O'Neill Tags: : rotaviruses, young children, Dr Trudi O’Neill, Department of Microbial, Biochemical and Food Biotechnology, vaccine 

Dr Trudi O’Neill, Senior lecturer in the Department of
Microbial, Biochemical and Food Biotechnology.
Photo: Anja Aucamp

Dr Trudi O’Neill, Senior lecturer in the Department of Microbial, Biochemical and Food Biotechnology, is conducting research on rotavirus vaccines.

Dr O’Neill was inspired to conduct research on this issue through her fascination with the virus. “The biology of rotaviruses, especially the genome structure and the virus’ interaction with the host, is fascinating.”

“In fact, it is estimated that, globally, ALL children will be infected with rotavirus before the age of five, irrespective of their socio-economic standing. However, infants and young children in poor countries are more vulnerable due to inadequate healthcare. The WHO estimates that approximately 215 000 deaths occur each year. This roughly equates to eight Airbus A380 planes, the largest commercial carrier with a capacity of approximately 500 seats, filled with only children under the age of five, crashing each week of every year.”

Alternative to expensive medicines 
“Currently, there are two vaccines that have been licensed for global use. However, these vaccines are expensive and poor countries, where the need is the greatest, are struggling to introduce them sustainably. It is therefore appealing to study rotaviruses, as it is scientifically challenging, but could at the same time have an impact on child health,” Dr O’Neill said.

The main focus of Dr O’Neill’s research is to develop a more affordable vaccine that can promote child vaccination in countries/areas that cannot afford the current vaccines.

All about a different approach 

When asked about the most profound finding of her research, Dr O’Neill responded: “It is not so much a finding, but rather the approach. My rotavirus research group is making use of yeast as vehicle to produce a sub-unit vaccine. These microbes are attractive, as they are relatively easy to manipulate and cheap to cultivate. Downstream production costs can therefore be reduced. The system we use was developed by my colleagues, Profs Koos Albertyn and Martie Smit, and allows for the potential use of any yeast. This enables us to screen a vast number of yeasts in order to identify the best yeast producer.”

Vaccination recently acquired a bad name in the media for its adverse side effects. As researcher, Dr O’Neill has this to say: “Vaccines save lives. By vaccinating your child, you don’t just protect your own child from a potentially deadly infection, but also other children in your community that might be too young to be vaccinated or have pre-existing health problems that prevents vaccination.” 

A future without rotavirus vaccination?

Dr O’Neill believes a future without rotavirus vaccination will be a major step backwards, as the impact of rotavirus vaccines has been profound. “Studies in Mexico and Malawi actually show a reduction in deaths. A colleague in Mozambique has commented on the empty hospital beds that amazed both clinicians and scientists only one year after the introduction of the vaccine in that country. Although many parents, mostly in developed countries, don’t have to fear dehydrating diarrhoea and potential hospitalisation of their babies due to rotavirus infection anymore, such an infection could still be a death sentence in countries that have not been able to introduce the vaccine in their national vaccination programmes,” she said. 

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