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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

Reverend Frank Chikane honours ‘Oom Bey’ at second Beyers Naudé Memorial Lecture for 2012
2012-09-11

Rev. Frank Chikane and Dr Choice Makhetha, Vice-Rector: External Relations at the UFS.
Photo: Stephen Collett
10 September 2012

The 9th Beyers Naude Memorial Lecture, a partnership initiative between the University of the Free State (UFS) and Kagiso Trust, was held on the South Campus of the university last week. The theme of the lecture focused on Collaborative partnership for social cohesion: Building of a nation with ethics.

Guest speaker, Reverend Frank Chikane, is a member of the UDF, ANC, Director-General in the Office of the President and a board member of Kagiso Trust.

In his speech, Rev. Chikane focused on the first 45 years in the life of Beyers Naudé, sketching a picture of a man who lived for what he believes in. When this former minister of the South African Dutch Reformed Church and member of the Broederbond, decided to question the morality of the Apartheid government after the Sharpeville Massacre in 1960, he made some changes in his beliefs and started to play a big role in the struggle against apartheid.

“If one know about ‘Oom Bey’s’ earlier life, you will see how radical his contribution was in turning South Africa from a country on the brink of destruction to a country of peace. ‘Oom Bey’ must be seen as a role model, someone we can aspire to be in South Africa today,” Rev. Chikane said.

“From his legacy one sees elements of someone building a nation with ethics.

“He took sides with the poor against an unjust system. Power breaks cohesion. It makes people not to think,” Rev. Chikane said.

If Afrikaners and black people stood together after the South African War (Anglo-Boer War), we would have talked a different language today. However, they did not. Afrikaners stood together, excluding black people and cohesion between all races was destructed. ‘Oom Bey’ tried to build relationships between people from all races in South Africa in an effort to create peace amongst all people. He was alienated from the Broederbond and defrockedrom the church.

In his speech, Rev. Chikane also said that South Africa did not succeed in collaborative partnerships in terms of the economy. “We need collaborative action to change our economy. This specific failure can destroy all that we have built together.”

“All South Africans can be like ‘Oom Bey” and make a contribution, especially in terms of the economy. To deal with this challenge, we can all contribute. This is important because due to a poor economy, many people are desperate and desperate people can destroy any relationship that we might have built so far.”

At this event, the university and Kagiso Trust also announced the winners of a poetry and essay competition that coincided with this last Beyers Naudé lecture for 2012. The award ceremony looked at the creativity of the learners, how they expressed themselves as well as the novelty of their work. Students as well as learners from schools in the Free State participated in the competition and first, second and third place winners received cash prizes as well as a book from Rev. Frank Chikane for their brilliant work.
 

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