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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

UFS hones focus to nurture world-class research - Business Day
2006-02-10

 

Sue Blaine
THE University of the Free State plans to concentrate academic study in five areas to strengthen its status as a research institution, the university said yesterday.

The Bloemfontein-based university will focus on areas it classes as development (economics, health, literacy and other human activities) and social transformation — an analysis of how South African society is changing from a philosophical and political viewpoint.

The other three research areas are new technologies, water resources and security, and food production and security.

“It makes sense to concentrate the university’s human resources, infrastructure, financial resources and intellectual expertise,” said university rector and vice-chancellor Prof Frederick Fourie.

The move introduces a style of research that matches international trends.

Universities in Canada, Britain and Australia are setting up their research departments in this way.

In SA, the universities of Stellenbosch, the Witwatersrand, Cape Town and KwaZulu-Natal have embarked on similar strategies.

Fourie gave the example of his alma mater, the US’s Harvard University, whose Nanoscale Science and Engineering Centre is an example of “clustering” on a larger scale.

The centre is a collaboration with Harvard, the Massachusetts Institute of Technology, the University of California, Santa Barbara, the Museum of Science, Boston, and universities in the Netherlands, Switzerland and Japan.

Fourie said the modern research world was so diverse and complex that no university could cover all bases so it was better to establish areas of expertise that made it different from its peer institutions.

Having scientists and researchers work in teams meant certain issues could be researched and developed in a multidisciplinary manner. “I think it’s the only way in which any university can excel. This will help SA become world class in selected areas,” Fourie said.

It is in chemistry that the cluster model has already had its most visible results, with a slice of the university’s on-campus pharmacological testing company Farmovs, established in the 1980s, sold to the US’s Parexel International.

The company is one of the largest biopharmaceutical outsourcing organisations in the world, providing knowledge-based contract research, medical marketing and consulting services to the global pharmaceutical, biotechnology and medical device industries, according to Biospace, an internet-based company providing resources and information to the life science industry.

President Thabo Mbeki, in his state of the nation address last Friday, committed government to allocating more resources to research, development and innovation, and increasing the pool of young researchers in SA.

He said government would “continue to engage the leadership of our tertiary institutions focused on working with them to meet the nation’s expectations with regard to teaching and research”.

The university used to be home to several A-rated scientists, who are considered by a peer review, conducted by the National Research Foundation, to be world leaders in their fields, but had lost them to other institutions. Fourie hopes to lure them back, and with them postgraduate students and funding for their work.

“At universities where you get a star researcher they tend to attract people and funding; if they leave they take that with them,” he said.

Fourie said R50m would be spent on the project, with some already spent last year and the last disbursements to be made next year.

There is R10m in seed money to gather experts and improve equipment and infrastructure, and R17m has been invested in chemistry equipment and staff.

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