Home Our Campaign Quality of Life Making a stand for kids with CP in South Africa

Making a stand for kids with CP in South Africa

Sukumani Dream is making assistive devices accessible and affordable for children with cerebral palsy (CP) in South Africa. For their work towards improving the Quality of Life for children with CP, Sukumani Dream was awarded a 2018 World Cerebral Palsy Day Merit Award.

The project

Established in 2013 by occupational therapists, Debbie Cresswell and Kabi Krige, along with physiotherapist Alison Walker, Sukumani Dream was initially a small project, initiated in one rural hospital. The organisation now put children with CP throughout many regions of Southern Africa back on their feet with standing frames.

Standing has been shown to be beneficial for children with CP, and other neurological conditions, in a number of ways, including:

  • developing the hip joint, as well as bone growth and density, through weight bearing activity
  • the activation and strengthening of antigravity muscles which comes from being in an upright position
  • improved lung function and bowel activity
  • improved socialisation and visual alertness.

Named after the siSwati word for stand, Sukumani Dream is the realisation of the founders’ hope that children with CP across South Africa have access to supportive equipment that will improve their lives.

The cost of most paediatric equipment on the market makes it inaccessible to the majority of South African families with children with CP, particularly in rural communities. This results in many children with CP left in incorrect positions, or lying on the floor for long periods, as many are unable to sit.

Building a dream

To raise funds to get started on their dream, the founders entered a half marathon and spread the word via social media, asking for donations from family and friends.

They then sourced materials and took their standing frame design to the Kamagugu Inclusive School to build a prototype. This first frame was tested and modified to improve effectiveness and safety.

Once enough money had been raised, the team commissioned Kamagugu Inclusive School to build the first batch of 10 standing frames. These were issued to children being treated at a local hospital and then sent home. Therapists undertook a home visit to ensure the frame was being used properly and was effective.

From that point, the demand for Sukumani’s standing frames grew, with links being made with other hospitals.

Currently, Sukumani work with 22 hospitals in South Africa and have also provided frames to children in Zimbabwe and Lesotho. They have also partnered with other organisations, NGOs and children’s homes to provide standing frames to children in their care.

More than just a frame

The standing frames are now built at two production sites, Kamagugu Inclusive School and the Johannesburg branch of Service Products, which is a group of sheltered employment factories.

By getting these frames made within South Africa by people with disabilities, Sukumani are not only helping children with CP, they are also empowering people with disabilities through skill development, employment opportunities and meaningful work.

“This opportunity has taught our learners so many new woodwork techniques and skills as well as important work ethic skills, and has also been an income generating project for the school. The money received from Sukumani Dream is used to further develop the woodwork centre, to help develop the learners’ skills.”- Principal, Kamagugu Inclusive School

Sukumani also partner with other organisations, such as fellow World CP Day Day Award winner, Malamulele Onward, for transportation and trialing equipment.

They are also fortunate to have Two Five Five Architects on board, doing pro bono graphic design and printing of instruction booklets for each frame.

To assist with fundraising, South African author and zoologist, Dr Gus Mills also lends his support as a guest speaker. Together with the help of their partnering organisations, Sukumani Dreams are not only building standing frames, they are also raising awareness about disability and the needs of children with CP across the country.

An outstanding future

In their five years of operation, Sukumani Dreams have issued around 700 standing frames to children in need.

The team at Sukumani Dream want to continue helping as many children throughout South Africa as possible. Their plans for the future include established online ordering, including a shop for other assistive devices and toys as well as expanding production sites to cover all 9 provinces.

They are also looking to adapt the frame to include different positions, as well as a removable bench. Clearly, even without modifications, these standing frames are already making a big impact on the lives of children with CP.

“It is easy to do activities with Tatenda while he is in the standing frame… It also helps him interact with other kids. I’m loving the Sukumani Dream standing frame. It is so helpful to me, to the family and to Tatenda. We are so happy to have it.”- Ruby, mother to child with CP.

Monika Schlehmeyer, Physiotherapist and Acting Allied Manager of Tintswalo Hospital says the hospital has found the Sukumani Dream standing frames very beneficial.

“Most children really enjoy standing in them and doing activities while standing. Here are some of the many changes we have noticed in the children using them on a daily basis:-

  • contractures in the hips, knees and ankles are prevented
  • feet are positioned in a good position
  • feeding and play is easier and is done standing
  • some of the children are now able to stand on their own, without the frame
  • postural, trunk and head control has improved
  • children experience the benefits of weight bearing in standing, such as reducing tone and muscle strengthening
  • we have found that children who stand in their standing frames daily are used to being handled and we can work better with them during therapy sessions,” she says.

The Sukumani team are well on their to achieving their dream of helping all South African children with CP stand.