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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

Internationally acclaimed academic applauded on Africa Day
2011-06-02

 
 Prof. Ali Mazrui, an internationally acclaimed and renowned academic.

One of the world’s top academics was given a warm welcome in the rather cold Free State recently.

Prof. Ali Mazrui, an internationally acclaimed and renowned academic, visited us as part of our Africa Day celebrations as arranged by the Centre for Africa Studies. He delivered a keynote address, entitled ‘Pro-democracy uprisings in an African experience: from Sharpeville to Benghazi.’

A festive atmosphere and the sound of drums welcomed this intellectual giant as well as other delegates upon their arrival at the CR Swart Auditorium on our Bloemfontein Campus. Some of the delegates who attended the Africa Day Celebrations, included: Mr Tom Amolo, High Commissioner from the Republic of Kenya; Mr Dan Kgothule, MEC of Arts and Culture in the province; Prof. Jeff and Dr Carla Ramsdell, visitors from America; Dr Allan Boesak and Prof. Nicky Morgan, Vice-Rector: Operations.

Prof. Frederick Fourie, former Vice-Chancellor and Rector of our university, also attended the celebrations, as did some scholars from neighboring schools.

Welcoming Prof. Mazrui, Prof. Jonathan Jansen, Vice-Chancellor and Rector of our university, quipped that he was relieved the world had not ended the previous weekend as was predicted, because he was looking forward to listening to such a renowned intellectual.

Prof. Lucius Botes, Dean of Humanities, followed Prof. Jansen at the podium. He said the ability to go from following a bridging course to being one of the top 100 intellectuals in the world, indeed distinguishes Prof. Mazrui as an exceptional academic. This intellectual is, among others, an Albert Luthuli Professor at the University of Jos, Nigeria and Andrew D. Professor Emeritus and Senior Scholar in Africana Studies at Cornell University.

In his introduction, Prof. Mazrui said he feels honored and flattered by this opportunity. He proceeded by referring to the history of Africa Day and added that he would rather prefer an Africa Week to an Africa Day to ensure that everybody has the opportunity to celebrate the continent.

He sang the praises of South Africa, as almost every other African country which attained liberation from European colonial rule in the 20th century, has been unable to maintain its democratic order beyond its first decade of independence.

“The Republic of South Africa, on the other hand, liberated Nelson Mandela in 1990, held its first democratic election in 1994, and already has its third president. Nearly two decades after Apartheid, South Africa has not outlawed opposition parties, or experienced a military coup, or permitted the Head of State to govern the country as a dictator.”

In his speech he compared the uprisings in Sharpeville during 1960 and Soweto during 1976 with the more recent pro-democracy uprisings in North Africa, based on the role that weapons and the lack thereof, as well as the youth and women played in the respective cases.

He concluded by saying the uprisings in Tunisia and Egypt have already resulted in ousting dictators who had been entrenched in power for decades, adding that in Libya a third dictator’s future is on the line. “Never in the history of the Arabs have there been so many popular uprisings which seem to be inspired neither by Islam nor by anti-imperialism, but in the quest for liberal reforms. Half a century earlier in Sharpeville and Soweto, South Africans experienced their own political awakening.”

Prof. Kwandiwe Kondlo, Director of the Centre for Africa Studies, closed the event with a word of thanks to the American academic and his wife, guests and attendees. He said discussions prior to the event revealed that more research has to be done regarding gender issues on the continent.

Prof. Mazrui also participated in conversations at the institute and a media briefing which was hosted earlier the day.

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