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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 launches projects to assist communities and current students
2011-03-16

Prof. Jonathan Jansen, UFS Vice-Chancellor and Rector and Mr Rudi Buys, Dean: Student Affairs, with learners at the  Bloemfontein-Oos Intermediary School.
Photo: Stephen Collett

The University of the Free State (UFS) has launched four exciting projects set out to improve the circumstances of its current and prospective students. These include a project that will honour dedicated and influential educators.

These community service projects in the starting blocks are: the UFS Schools Partnership Project, Extreme Make-over Project, Great Teachers Project and the No Student Hungry Campaign.
 
The Schools Partnership Project aims to support 21 schools across the Free State in helping them to become top achievers in the next three to five years. The schools involved were selected last year, after which the groundwork for the project was finalised. Although it mainly focuses on improving scholars' results in mathematics, accounting, physical sciences and English, it is also custom-designed according to the specific needs of the school, as indicated by the respective governing bodies beforehand. As a bonus, scholars of the schools involved will be given an opportunity to be introduced to student life; something Dr Choice Makhetha, UFS Vice-Rector: External Relations (acting), claimed to be of great importance. “We will invite Grade 10 to 12 learners to winter and summer schools being presented at the university. We will connect learners with students (one student adopts one learner for the day) for them to experience campus life. Grade 12 learners will also receive an invitation to the May 2011 graduation ceremony,” Dr Makhetha said.
 
Adding to the university's involvement at schools on local level, the newly upgraded Bloemfontein-Oos Intermediary School with its 112 UFS-sponsored tables will officially be revealed by the end of April. Although this school's upgrade showcases the power of partnerships, it is of special importance to the university, as it also marks the first school to receive an extreme make-over as part of the 'Extreme Make-over for Schools Project'. This project, in conjunction with the local business community, university staff and students, the community, the Department of Basic Education and SIFE (Students in Free Enterprise), is considered to be a flagship project of the Vice-Chancellor and Rector, Prof. Jonathan Jansen. Part of the project’s agreement includes visits from a group of about 100 students representing campus initiatives such as the UFS’s Kovscom, Rag and SIFE, which will contribute to the improvement of the schools' resources within a period of 10 – 15 weekends. “We invite support from all corners. South Africa has a business community committed to improving the social circumstances of its community and we plead that they also come to the rescue of the Bloemfontein-Oos Intermediary School,” said Dr Makhetha.
 
By spreading a 'can do' attitude, the UFS aims to honour noble and remarkable teachers across the country by means of its 'Great teacher's project'. Through the project, fellow citizens are encouraged to submit their stories on their former or current teachers’ dedication and their positive impact which are often overlooked. The panel of seasoned education scholars and practitioners will select the top 500 stories based on the stories' clarity, distinctiveness, plausibility and affectability, which will be perpetuated in a book called 'Great Teachers', to be released at the end of this year. Proceeds are destined to serve as bursaries for students who wish to pursue a career in education. According to Prof. Jansen the ideal teacher is: “Somebody who was among, but stood out above, their colleagues, a person who made a lasting impact long after the details of subject matter content of examination preparation were forgotten.”
 
Regardless of this exceptional effort of supporting schools across the province, the UFS remains committed to its students and their social welfare by means of the 'No student hungry' campaign. This project provides financially challenged students the opportunity to purchase food from the Thakaneng Bridge on the Main Campus in Bloemfontein by using their student cards at two selected kiosks serving balanced meals. The project, which is under the guardianship of Ms Grace Jansen and Dr Carin Buys, relies solely on several fund-raising projects across the country. These women are the respective spouses of the Rector and Dean: Student Affairs, Mr Rudi Buys. According to Ms Jansen this initiative was proposed after UFS staff reported that many students were struggling to concentrate on their studies due to hunger pangs. Although the campaign recognizes students with strong academic records, it doesn't overlook those who need a food bursary which might result in them dropping out. Ms Jansen said as the external funds gathered increase, so will the amount of students being supported by the project. “The plan is to continue until the fate of hungry students had come to an end,” she said.
 

Media Release
14 March 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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