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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

Artistic development at UFS to transform the face of Bloemfontein creatively
2015-07-02

The 7-metre high ‘Urban Fox’ is one of Alex Rinsler's artworks adding a fragment of the wild to the city of Shanghai in China.

Bold, bright, and beautiful public art sculptures are in the inception phase at the university’s Bloemfontein Campus. Manchester-based public artist, Alex Rinsler, of the Programme for Innovation in Artform Development (PIAD)’s forum for artist development, is to install three enthralling sculptures in the city of Bloemfontein.

The PIAD forum for artist development is an initiative of the Vrystaat Arts Festival, formerly known as the Vryfees, which aims to celebrate art in the Free State by hosting experimental art practices. In its capacity as a PIAD partner, the University of the Free State promotes increased access to, and participation in, culture as a form of human development.

Presenting an artist’s talk titled ‘Urban Safari: Art in public space,’ on the Bloemfontein Campus recently Rinsler introduced himself and his creative ideas to students, staff, and the public at the Johannes Stegman Art Gallery. The talk served as an invitation to the active participation of Bloemfontein citizens in all phases leading to the installations. Dispersed across the Mangaung Metropolitan, the giant sculptures are intended to capture and reflect different aspects of the community’s lived experiences. 

As a public artist based in the United Kingdom (UK), Rinsler has exhibited in cities nationally and internationally, with the intention of bringing a touch of the wild to urban lives. His vision is to witness the development of cities into cultural boulevards, and explore “what we can do to bring back the sense of nature, the wild” by adding new symbolism to urban lifestyle.

“I believe in creating work accessible to the public, which stimulates conversation,” said the Clore Leadership Programme Fellow (University of Manchester) and Founder of Pirate Technics - an artistic practice company.

In 2012, he worked with 31 Master’s students from 24 countries on an icon for global peace named “Under the Baobab” in London. The colourful and magnificent Baobab tree made from pieces of fabric representing distinct cultures told the story of migration to London.

Rinsler is determined that the Bloemfontein “project, similar to the London installation, will create imagery that people will remember.”

Dr Ricardo Peach, Director of the Vrystaat Arts Festival and PIAD, hopes the project fosters diversity while producing a “communal cultural product." 

“What I know about Alex’s work is that he will be working with what he calls a self-selected community, people who are interested in this, and who want to work together to build these sculptures, as part as a process for them to get a sense of where they belong, and their input into the city. It’s about people telling their own stories.”

The public installations are a way of transforming the landscape, and connecting people of “a place like Bloemfontein where communities are often still so divided,” said Peach.

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