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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

When you are deaf, you have to work very hard to join in the conversation
2014-09-11

 

Dr Magteld Smith

A researcher at the University of the Free State is part of an overseas audiological breakthrough, after receiving a newly developed cochlear implant processor.

Dr Magteld Smith, researcher at the University of the Free State’s Department of Otorhinolaryngology, is the first South African to receive the Rondo cochlear implant processor from Med-El in Austria, manufacturers of cochlear implants and audiology-assisting appliances.

In the field of cochlear implants, the Rondo device is very advanced in the sense that the single-unit device is wireless and easily adapts to the sound of various environments (i.e. nature, conference halls, planes and phones). It also enables the receiver of a cochlear implant to hear more than one sound at a time – something that wasn’t previously possible.

Dr Smith tells about the meaning of the device in just a short time: “For the first time I can take a walk with my dog and hear both our footsteps on the gravel of the dirt road. I can hear my own footsteps, as well as the chirping of three different birds. All at the same time.”

Dr Smith, who is currently devoting her research to the medical-social model of the global organisation, International Classification of Functioning, Disabilities and Health, as well as research in all fields of deafness, relates the anxiety, frustration and depression which formed part of her daily existence. It also complicated and undermined her academic participation.

“Deafness is very traumatic. When you are deaf, you have to work so much harder to compete in a hearing world and to join in the conversation. Because of your deafness you become anxious about misunderstandings in the workplace.”

Dr Smith is working hard and constantly not to take a back seat in the academy due to her deafness. On completion of the Hubert H. Humphrey Fellowship programme, she received a certificate signed by the American president, Barack Obama, and was named as one of the top three researchers among 400 researchers from 192 countries. Only two South Africans are selected every year by the American State and International Institute for Education. 
 
In June this year, she delivered a presentation of her work and research at the 13th International Conference on Cochlear Implants in Munich, Germany. In July this year, she delivered a presentation at the 5th International Conference for Global Hearing Health. In August she was awarded a scholarship from the Golden Key International Honour Society for outstanding scholastic proficiency and academic merit.

“As a child, my parents were told that I was ineducably disabled. Today, I am grateful for the endless speech therapy since my toddler days, and to my dear mother, Jo, and late father, Chris Boshoff, and their firm belief in God which made them believe in me as a person with a congenital deafness. I am grateful for their unconditional love, endless patience, encouragement and support through my long journey in a competitive hearing world. This, together with the help of technology, enabled me to make a significant contribution to the academic world. Everything in my life is undeserved grace, pure kindness.” 
 
 

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