For Philile Hlophe, caring for three wheelchair-bound children living with Spinal Muscular Atrophy (SMA) means managing their daily physical care in an overcrowded home, while constantly worrying about how to get them to healthcare facilities and into special-needs schooling. The 35-year-old mother of five says she is struggling to provide a suitable environment to support them as their progressive condition continues.

Hlophe lives with her family in Emolweni, in the Emaromeni area of KwaZulu-Natal. Three of her children, Sibonakaliso, 17, Uyanda, 15, and Ndalo, 3, have SMA and all rely on wheelchairs donated by the non-governmental organisation, Gift of the Givers Foundation.

The children were diagnosed at St Mary’s Hospital and Life Crompton Hospital when they were young, around the time they were expected to start walking. The rare genetic neuromuscular disorder causes progressive muscle weakness and wasting as people living with SMA have insufficient levels of the survival motor neuron (SMU) protein. 

As a genetic condition, both biological parents likely were carriers of the mutated gene, although they show no symptoms. No other family members on both sides have been diagnosed with SMA. Hlophe has two other children, Kukhanya, aged 8 and Khulekani, aged 20, neither of whom display any motor neuron abnormalities. 

No transport to reach healthcare facilities

The wheelchair-bound children need regular physiotherapy, at least once or twice a month and have been assisted at Crompton Hospital and in Pinetown and Waterfall through independent therapists. But Hlophe told Health-e News she can no longer take them as often as they need because she does not have transport.

“I used to have transport that helped me take them to physiotherapy and hospital appointments. However, in October last year, their eldest brother, Khulekani, 20, had an accident, and the car was beyond repair. With God’s grace, my son sustained only minor injuries.” 

Hlophe now has to hire a vehicle when the children need medical attention.

“I pay R400 to take them to healthcare facilities.”  

Hlophe works full time at a supermarket and the family receives disability grants. She also depends on her eldest child and sister for additional assistance if needed.

17 family members sharing one home

17 family members, young and old, share the family home, a five-room house with three bedrooms inside and two outside, but the limited space makes it difficult for the three wheelchair users to move around and manage their daily needs. Bathing the children and helping them use the toilet can also be challenging as family members sometimes struggle to lift or carry them because they have grown heavier.

“What I appreciate most about my three children is that they do not make me feel that they are a burden. Instead, they try to do other things where they can, even though they cannot move around the house independently and need assistance with many other everyday activities,” says Hlophe.

“I also pay someone about R1,000 a month to look after them at home. Nevertheless, I am very fortunate that their father is present and involved in their lives. His family and siblings are also supportive, although they live in Port Shepstone, which makes consistent assistance difficult,” Hlophe shares.

Uyanda has been diagnosed with SMA Type 3, and Sibonakaliso and Ndalo have SMA Type 2. Ndalo also contracted pneumonia as muscle weakness affects breathing, allowing lung secretions to build up in the airways. 

Type 2 SMA is a more severe form of the condition. Children may be able to sit independently but are generally unable to walk and can develop breathing difficulties as their muscles weaken. Type 3 is milder, mainly affecting the ability to walk, with breathing problems less common.

No school attendance for 3 siblings with SMA

A key concern for the family is that none of the three children currently attend school. They previously attended Open Air School, a public special-needs school for learners with physical disabilities. Hlophe tried to find a school for them this year, but was unsuccessful because she could not afford the costs of scholar transport, uniforms and other school-related activities.

Hlophe is an active member of the eThekwini Municipal Structure for Parents with Disabled Children, a support network for parents of children with disabilities, which provides a platform to share their stories, experiences and the challenges they face while raising their children.

The group holds monthly meetings with social workers who offer advice and guidance on caring for children with different disabilities to help parents better understand their needs, and learn how to manage specific challenges and support one another through their experiences.

The family’s greatest needs include suitable housing that can accommodate the family, assistance with the children’s daily care, access to appropriate schooling and reliable transport to hospitals for medical appointments and physiotherapy.

“The other support I need is assistance with wheelchair maintenance and repairs, as well as support for ongoing medical care and medication,” says Hlophe. 

Local council responds

Hlophe approached her ward councillor seeking assistance with several of these challenges. A committee member was sent early last year to assess the family’s circumstances. There was no further follow-up and the person did not return.

Health-e News spoke to eThekwini Ward 9 councillor, Siyabonga Nala, who confirmed that he knows of the Hlophe family’s circumstances and that three of the children have SMA.

“We are still trying to find ways to assist them with the challenges they have raised. What I can say for now is that we are in the process of building them a toilet that can also accommodate the children who use wheelchairs. I will contact them soon and update them on the other processes we are planning for them.”