Latest News Archive

Please select Category, Year, and then Month to display items
Previous Archive
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

Sites of memory. Sites of trauma. Sites of healing.
2015-04-01

Judge Albie Sachs – human rights activist and co-creator of South Africa’s constitution – presented the first Vice Chancellor’s Lecture on Trauma, Memory, and Representations of the Past on 26 March 2015 on the Bloemfontein Campus.

His lecture, ‘Sites of memory, sites of conscience’, forms part of a series of lectures that will focus on how the creative arts represent trauma and memory – and how these representations may ultimately pave the way to healing historical wounds. This series is incorporated into the five-year research project, led by Prof Pumla Gobodo-Madikizela, and funded by the Mellon Foundation.

Sites of memory and conscience – and healing

“Deep in solitary confinement, I read in the Bible: ‘the lion lay down with the lamb … swords will be beaten into ploughshares.’” And with these opening words, Judge Sachs took the audience on a wistful journey to the places in our country that ache from the past but are reaching for a better future at the same time.

Some of the sites of memory and conscience Judge Sachs discussed included the Apartheid Museum, Liliesleaf, District Six Museum, and the Red Location Museum. But perhaps most powerful of them all is Robben Island.

Robben Island

“The strength of Robben Island,” Judge Sachs said, “comes from its isolation. Its quietness speaks”. Former prisoners of the island now accompany visitors on their tours of the site, retelling their personal experiences. It was found that, the quieter the ex-prisoners imparted their stories, “the gentler and softer their memories; the more powerful the impact,” Judge Sachs remarked. Instead of anger and denouncement, this reverence provides a space for visitors’ own emotions to emerge. This intense and powerful site has become a living memory elevated into a place of healing.

After Judge Sachs visited the National Women’s Memorial in Bloemfontein some years ago, he came to an acute realisation as he read the stories, experienced the grief, and saw the small relics that imprisoned commandoes from Ceylon and St Helena sculpted. “It’s so like us,” he thought, “our people on Robben Island making a saxophone out of seaweed, our people carving little things. It was so like us. It was another form of inhumanity to human beings in another period.”

The Constitutional Court

The Constitutional Court next to the Old Fort Prison is also a profound site of trauma and healing. Bricks from the awaiting trial lock-up were built into the court chambers. “We don’t suppress it, we don’t say let’s move on. We acknowledge the pain of the past. We live in it, but we are not trapped in it. We South Africans are capable of transcending, of getting beyond it,” Judge Sachs said.

Transforming swords into ploughshares

Judge Sachs had great praise for Prof Gobodo-Madikizela’s research project on Trauma, Memory, and Representations of the Past. “You convert and transform the very swords, the very instruments, the very metal in our country. In a sense, you almost transform the very people and thoughts and dreams and fears and terrors into the ploughshares; into positivity.”

We use cookies to make interactions with our websites and services easy and meaningful. To better understand how they are used, read more about the UFS cookie policy. By continuing to use this site you are giving us your consent to do this.

Accept