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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

The launch of a unique conservation project
2011-06-06

 

Our Department of Animal, Wildlife and Grassland Sciences launched a very special pilot project at Woodland Hills Wildlife Estate in Bloemfontein on Friday 03 June 2011, which aims to eventually aid in the conservation and study of one of Africa’s most graceful animals.

The project aims to provide the scientific basis needed for making future decisions in the best interests of the giraffe in the Kgalagadi Transfrontier Park in the Northern Cape and involves collaring and monitoring the behaviour and movement of these animals via GPS.

Based on the public interest in the giraffe and the increased impact of the growing giraffe population on the vegetation in the area, SANParks has been considering the translocation of a number of Kgalagadi giraffe. Due to limited information regarding their adaptation success and potential impact on their new environment, thorough planning and subsequent monitoring of the species is required.

Mr Francois Deacon from our university decided to undertake a PhD study to address the existing challenges. This will be the first study of its kind, undertaken on giraffe.

He says he decided on this project because of his love for animals and conservation. “There are nine sub-species of giraffe and seven of these are already endangered. I want to involve people and make them aware of the plight of the animals and the need for conservation,” he said.

The project kicked off on Friday morning, with a group of students and curious nature-lovers tracking a herd of giraffe at Woodland Hills. The challenge laid in identifying one of the animals which could easily be collared with a GPS device, tranquilising it, and applying the device, without harming the animal.

After a young bull was identified, it was up to Dr Floris Coetzee, a veterinarian, to get close enough to the animal to tranquilise it, and to the group of students to catch it and hold it down. All this was done perfectly and the animal was fitted with its new collars. The collars were designed and made by Mr Martin Haupt, who gained extensive experience in the design of similar collars for other research studies.

Mr Deacon will spend the following two weeks personally monitoring the animal constantly, to ensure that the collars do not cause any discomfort or injury and to determine whether it should be removed or adapted.

It has taken Mr Deacon over a year to plan the collaring process and the associated study. He says the main challenges in the project are financial, since it will cost approximately R500 000 to run over five years.

Thus far he has been supported by Mr Pieter Malan of Woodland Hills, Mr Cas Kempff of Cas Kempff Consulting Engineers and Prof. Frans Swanepoel of the UFS’ Directorate of Research Development, all of whom have been benefactors of the project.
Information gathered from the pilot project will provide the data to assess how to best fit the collar onto the giraffe to ensure that the animal is comfortable and that the collar will last in the wild.  Scientific data will be generated and processed for use by the Woodland Hills Wildlife Estate management.

Should the pilot project be successful, between four and eight giraffe in the Kgalagadi will be tracked using the satellite GPS collars. The GPS collars will enable the constant recording of the location of individual giraffe for up to 2 years. This will allow control and monitoring of the animals in real-time.

The main benefits of the project include, amongst others, improved decision-making, informing tourism development, education and community involvement, improved sustainability and improved cross-border collaboration between South Africa and Botswana.

Anyone who wishes to get involved with the project or get more information, should contact Me. Sonja Buhrmann at sbuhrmann@vodamail.co.za or 0827735768.
 

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