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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

Getting out of the dark
2015-06-10

 

ESKOM is making daily announcements on the status of the power grid.

Anton Calitz, Electrical Engineer at University Estates, is in continuous contact with Eskom and Centlec in an effort to stay abreast of load shedding.

According to Anton, Eskom has recently - the week of 20 April - been focusing on the evening peak, and has announced STAGE 1 load shedding from 17:00-22:00; thus, the Bloemfontein Campus should be able to continue business as usual during the day, except for Thursdays from 18:00 and, possibly, Fridays from 17:00.

Where can I get more information about load shedding stages?

Apart from Eskom’s webpage, staff can also visit GRID WATCH. Click on "Search", then under "Schedules". Look for "Mangaung Local Municipality", and select "GROUP 4". Save this location. “This can even be loaded onto your mobile device.”

“The time slots can be seen for a couple of days in advance, to allow us to plan around the possibility of load shedding in our daily lives,” said Anton.

Please note: ESKOM can change the STAGE level at any time. Therefore, keep an eye on GRID WATCH and News24.

View the typical seven-day planner for the Bloemfontein Campus (Group 4), which indicates the STAGE 2 and 3 possibilities. Take note that, on some days, the STAGE 2 and 3 time slots are the same.

More load shedding tips: Your IT needs

The UFS Data Centre (Computer Room) is fully serviced by a generator facility, and can function without external power supply for a few days.

The generator servicing the UFS data centre does NOT provide power to the outlying facilities. This implies that all digital equipment at gates, booms, and access points will be shut down until the power is restored to these facilities. “We are now, in collaboration with Nico Janse van Rensburg, in a process to install UPS facilities at these points, which will ensure two to three hours of power supply at these points, even during load shedding,” said Dr Vic Coetzee, Senior Director: ICT Services.

No Wi-Fi will be available, as it is dependent on the power supply to the buildings where it is installed.

All servers are contained in the data centre, and will be kept running by our generators.

How to manage load shedding and your IT needs:

1. Get into the habit of saving your work regularly on computer so that you don’t lose your work/files during load shedding.
2. Back up important data. Keep to a schedule of regular back-up.  Make sure your computer back-ups are safe and recoverable.
3. Keep all electronic devices charged and ready to run on battery power. Keep your cellphone charged: some old-style Telkom landlines will still operate during power outages, but others won't.
4. Remember, when power supply is restored, it sometimes happens that a power surge is sent through the network, which will damage your computer.  Fortunately, laptop computers will not suffer this fate as their power is provided through an external power pack. Often, this power pack will be damaged, but not the laptop itself.
5. It makes good sense to reboot your computer daily, not only in terms of power shedding, but also in terms of updating the drivers, software, etc.
6. Switch off all computers and other electrical equipment at the wall plug overnight and on weekends.
7. Should your IT equipment not switch on after a power outage, log a call with the ICT Services. You can also call them at x2000.

More information, guidelines and contact numbers

 

 

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