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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

Africa's Black Rhino conservation strategy must change
2017-07-10

 Description: Black Rhino Tags: conservation strategy, black rhino, Nature Scientific Reports, National Zoological Gardens of South Africa, extinction, decline in genetic diversity, Prof Antoinette Kotze, Research and Scientific Services, Dr Desire Dalton 

The black rhino is on the brink of extinction. The study that was 
published in the Nature Scientific Reports reveals that the
species has lost an astonishing 69% of its genetic variation. 
Photo: iStock

The conservation strategy of the black rhino in Africa needs to change in order to protect the species from extinction, a group of international researchers has found. The study that was published in the Nature Scientific Reports reveals that the species has lost an astonishing 69% of its genetic variation. 

South African researchers took part 

The researchers, which included local researchers from the National Zoological Gardens of South Africa (NZG), have highlighted the fact that this means the black rhino is on the brink of extinction. "We have found that there is a decline in genetic diversity, with 44 of 64 genetic lineages no longer existing," said Prof Antoinette Kotze, the Manager of Research and Scientific Services at the Zoo in Pretoria. She is also affiliate Professor in the Department of Genetics at the University of the Free State and has been involved in rhino research in South Africa since the early 2000s.  

DNA from museums and the wild 
The study compared DNA from specimens in museums around the world, which originated in the different regions of Africa, to the DNA of live wild animals. The DNA was extracted from the skin of museum specimen and from tissue and faecal samples from animals in the wild. The research used the mitochondrial genome.

"The rhino poaching ‘pandemic’
needs to be defeated, because
it puts further strain on the genetic
diversity of the black rhino.”


Ability to adapt 
Dr Desire Dalton, one of the collaborators in the paper and a senior researcher at the NZG, said the loss of genetic diversity may compromise the rhinos’ ability to adapt to climate change. The study further underlined that two distinct populations now exists on either side of the Zambezi River. Dr Dalton said these definite populations need to be managed separately in order to conserve their genetic diversity. The study found that although the data suggests that the future is bleak for the black rhinoceros, the researchers did identify populations of priority for conservation, which might offer a better chance of preventing the species from total extinction. However, it stressed that the rhino poaching ‘pandemic’ needs to be defeated, because it puts further strain on the genetic diversity of the black rhino. 

Extinct in many African countries 
The research report further said that black rhino had been hunted and poached to extinction in many parts of Africa, such as Nigeria, Chad, Cameroon, Sudan, and Ethiopia. These rhino are now only found in five African countries. They are Tanzania, Zimbabwe, Kenya, Namibia, and South Africa, where the majority of the animals can be found. 

 

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