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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

UFS Centenary 2004 / 2005 October (centenary) fest Activities
2004-10-08

Friday, 08 October 2004
17:00 – 24:00
Callie Human Centre, UFS
Macufe Rock Concert
With: Rooibaardt, Karen Zoid, The Narrow, F****polisiekar, Stuurbaard Bakkebaard (from the Netherlands), DJ Bob, Ready D, Neva Me.
Cost : R50-00
Bookings : Pacofs (051-447 7772)

Sunday, 10 October 2004
16:00 – 18:00
Callie Human Centre, UFS
Macufe Three Tenors Concert
With: Phillip Kotze, Chris Coetzer and Du Preez Stolz, as well as Angela Kerrison. Free State Symphony Orchestra conducted by Chris Dowdeswell.
Cost :R60-00 (adults), R40-00 (children, scholars, students and pensioners)
Bookings : Pacofs (051-447 7772)

Tuesday, 12 October 2004
11:00 – 15:00
Centenary Complex, UFS
Inauguration of Centenary Complex
Open day with a variety of musical recitals in different rooms
Cost : Free
Enquiries : Elize Rall (051-401 3382)

15:00 – 17:00
Parking area next to the Centenary Complex, UFS
Kovsie Mosaic Day
Collage of the Century, Dance to the beat, Cultural Cartoon,
Who’s line is it anyway?
Cost : Free
Enquiries : Louis Botha (051-401 2819) or
AC Geldenhuys (084 585 3338)

Wednesday, 13 October 2004
19:00
Centenary Complex, UFS
Première of documentary film : The Life and Legacy of  King Moshoeshoe
Note : By invitation only
Enquiries : Elize Rall (051-401 3382)

Thursday, 14 October 2004
18:45 – 21:00
Red Square (in front of Main Building), UFS
Centenary Honorary Doctorate Degree Graduation Ceremony
Conferred on: Me. Antjie Krog, Prof. Jakes Gerwel, Mr. Karel Schoeman, Dr. Frederick van Zyl Slabbert, Prof. Saleem Badat, Dr. Khotso Mokhele, Prof. Robert Bringle, Prof. Leo Quayle, Prof. Jack de Wet, Prof. Kerneels Nel (posthumously), Prof. Boelie Wessels and Prof. Jaap Steyn .
Cost : Free. Please RSVP if you would like to attend.
Enquiries : Elize Rall (051-401 3382)

Friday, 15 October 2004
18:30
Centenary Complex, UFS
Alumni Dinner and Centenary Award Ceremony
Approximately 140 centenary medals will be awarded in acknowledgement of exceptional contributions to the development of the University. The award ceremony is followed by the Alumni dinner in the Callie Human Centre.
Cost : R100-00/person
Enquiries : Elize Rall (051-401 3382)

15:00 (to 12:00, Saturday, 16 October 2004),
UFS campus
Reunion : Momentum Adventure and Expedition Association
Including : Setting up of the Kovsie Momentum base camp, champagne breakfast and abseiling.
Cost : R50-00/person for breakfast
Enquiries : Gerrit van der Merwe (072 4317 153) or
Niel Fraser (082 772 5642)
Website : www.uovs.ac.za/associations/momentum_hrcc.

19:00 (to 11:00 Sunday, 17 October 2004)
Reunion : Cantare Revue Group
Including : Formal dinner, budget show, bring and braai, church service.
Cost : R100-00/person for the dinner
Enquiries : Louis Botha (051-401 2819)

19:00 (to 24:00 Saturday, 16 October 2004
Reunion : House NJ van der Merwe
Including : Senior Student’s Association and concerts
Cost : R5-00/person
Enquiries : Tutu Ntlathi (051-401 4122 / 072 865 2227)

Saturday, 16 October 2004
09:00 – 10:00
Committee Room 120, Faculty of Theology
Founding of Theology Alumni Association
Enquiries: Henna Nel (051-401 2669)

10:00 – 12:00
Parking area, CR Swart Building, UFS
Alumni Campus Tour
Including : Visits to the new physical developments on campus
Cost : Free
Enquiries : Jeanette Jansen (051-401 3594)

10:00 – 12:00
Sonnedou gazellie (next to NJ van der Merwe Residence), UFS
Reunion : Ladies’ Tea
Visit our new gazellie and find out what Sonnedou is up to these days.
Cost : R25-00/person
Enquiries : Anne-Marie Delport (072 109 0507)

12:00 – 16:00
JBM Hertzog Residence (garden in front of Senior Student’s Association), UFS
Reunion : Braai
Cost : Approximately R20-00/person
Enquiries : Hattingh Bornman (084 240 5226)

12:00 Vergeet-my-nie Residence, UFS
Reunion : Braai
Bring and braai. We supply the facilities. Bring old photographs and stories. Enjoy Aunt Juls’ last visit.
Cost : Free
Enquiries : Mari Jordaan (051-444 2832/072 392 4444)

12:00 HF Verwoerd Residence Senior Student’s Association, UFS
Reunion : Spit roast
Cost : R60-00/person
Enquiries : Jan-Chris Landman (051-401 3613 / 082 664 6062)

18:30 Floreat Hall, Bloemfontein Civic Centre (Braam Fisher Building)
Irawa 60 Reunion
For all former editors, former and current main editorial staff and coworkers
Cost : R100-00/person
Enquiries : Sanri van Wyk (072 333 1011)
Elzette Boucher (072 180 6265)

19:00 – 24:00 Red Square (in front of Main Building), UFS
Informal Alumni Reunion
Spit roast and stories in a marquee
Cost : R60-00/person
Enquiries : Elize Rall (051-401 3382)

Sunday, 17 October 2004
10:00 – 11:00
Kovsie Church
Church Service

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