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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

SRC visits the US as part of Global Leadership Preparation Programme
2012-06-07

The Student Representative Councils (SRC) of the University of the Free State’s (UFS) Bloemfontein and Qwaqwa Campuses will be travelling to the United States from 10-24 June 2012 on an intensive leadership development programme.

The Global Leadership Preparation Programme, initiated by the Vice-Chancellor and Rector, Prof. Jonathan Jansen, has been designed to ensure that South Africa’s next generation of leaders understand their unique place in a global context, the interconnectedness of global and local society and various possibilities for change.
 
The group of 36 students will be visiting Washington DC, Boston and New York.
 
“As a university we recognise that students who lead on campus must be prepared to also lead the country, which requires amongst others greater understanding of the impact and influence of global developments (social, economic, political) on nation states and campuses. This includes knowledge to deepen democratic participation and real representation – issues we know that often are contested in important student governance structures such as SRCs,” says Mr Rudi Buys, Dean of Student Affairs.
 
The group will be studying among others the impact, influence and limits of the United Nations in global leadership; the impact of transnational companies on economic policies of African countries; the impact of American universities on African leadership; the impact of international philanthropy on African development and the impact of American public institutions on learning among the disadvantaged: lessons for South Africa.
 
The programme complements and strengthens other leadership preparation programmes of the UFS, such as the Leadership for Change Programme and the Gateway College Programme – an intensive orientation programme for all undergraduate students. It will give students a competitive advantage in leadership over more local programmes and initiatives that seldom look beyond the campus, or even beyond the country, in preparing the next generation of leadership.
 
“We value this initiative by the university leadership to give us the opportunity to explore and spread our wings and gather as much knowledge as we can get to raise the bar in terms of student governance and leadership. The university is amongst the few in the country that sees the need to strengthen and develop its student leadership by exposing it and allowing it to understand its role in a global context. This is a chance that we take seriously and we intend to use it to the betterment of the institution,” says Bongani Ngcanga, President of the Central SRC.
 
“While we welcomed the initiative taken by the university to design this programme, the SRC questioned and debated heavily on the merits and real contribution of such a programme. Only on approval of the academic and development profile of the programme did we accept its merits and now are excited about the value thereof. This opportunity goes beyond the term of the SRC and will develop and equip us for the great positions we will hold in the future. I am looking forward to meeting influential lobbyists, profound academics and strong politicians,” says Richard Chemaly, SRC President of the Bloemfontein Campus.
 
Upon their return, the SRCs will set a new benchmark for future councils, raising the bar to that of internationally acclaimed student leadership. One of the objectives of the programme is to produce written, reflective statements about the learning that resulted from the trip and to start dialogues in order to improve student governance and governance as a whole. Workshops will also be presented for aspirant student leaders on leadership lessons learnt from an international perspective.
 
Members of the SRCs are covering part in the cost of the programme and generous contributions have also been received from outside the university.

Media Release
07 June 2012
Issued by: Lacea Loader
Director: Strategic Communication
Tel: +27(0)51 401 2584
Cell: +27(0)83 645 2454
E-mail: news@ufs.ac.za

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