What does it mean to have to grow up without legs? What do children with prosthetic limbs feel when confronted with a society that doesn’t really understand them? In conjunction with Jumping Kids NGO, University of the Western Cape physiotherapists Liezel Ennion and Sarah Manig set out to find out.
On 19 April 2021,Ennion and Manig spent the day at a Jumping Kids clinic at Ice-Express prosthetics in Pretoria, collecting data, filming and interviewing children with bilateral above knee amputations, their mothers and prosthetist Johan Snyders. From the interviews, it was clear that the traditional fiberglass prosthetics were not functional - the children could not even walk with them. But there were other matters that were just as clear.
“The biggest impact of having bilateral lower limb amputations for these children was psychological and social, where the children felt like they were not seen, and that they felt like a burden for their families,” says Ennion. “They were also saddened, and felt lonely, not being able to participate in play with their friends.”
Jumping Kids is a Pretoria-based NPO which strives to provide children from disadvantaged backgrounds across South Africa with access to the latest prosthetic technology. The NPO traditionally provides children - especially children with bilateral above-knee (transfemoral) amputations - with Blade prosthetics as early as possible.
“These prosthetics are much lighter, and allow children to be a lot more active than the traditional fiber-glass prosthetics that are issued by the National Department of Health,” notes Manig. “This is if the child is fortunate enough to even receive a prosthesis through the public health system - that’s far from a guarantee.”
But it’s not just about the technology. Children who are enrolled in the Jumping Kids programme and receive prosthetics, are also encouraged and supported to access able-bodied schools, as opposed to special schools for children with disabilities - mainly because most special schools do not offer schooling until Grade 12.
“Jumping Kids support children with the latest and most appropriate and functional prosthetic technology available, yes,” Ennion says. “But they also mentor children, advocate to include them in main-stream schooling and access tertiary education. They support them to participate in sports, which helps them build confidence and other essential life skills - essentially removing any "disability" imposed on them by circumstances outside of their control.”
Joining For Jumping: Enabling Empowered Citizens
Ennion is a full-time permanent academic at UWC’s Department of Physiotherapy, and her research is focused on improving access to rehabilitation and prosthetic service delivery in South Africa. She has a long history of working with Jumping Kids, and is currently collecting data on the prevalence of lower limb amputation and the impact of providing prosthetics to children with lower limb amputations.
“I got involved with the Prosthetist who initially started Jumping Kids, Johan Snyders, when I started my PhD ten years ago,” Ennion recalls. “As part of my research, I came across an alternative method of socket casting (direct lamination fitting of prosthetics onto the residual limb, as opposed to the traditional plaster casting technique) which I thought would improve access to prosthetics for people with lower limb amputations in rural areas. Johan alerted me to the fact that providing children with prosthetics is even more challenging than providing adults with prosthetics - and introduced me to Jumping Kids and their ground-breaking work.”
At the same time, Manig, a UWC Physio alumna, photographer and filmmaker, has volunteered her time and film-making talents to assist Jumping Kids to raise their media profile. Sarah is also passionate about mobility and completed her Master’s Degree by filming a documentary on the challenges that persons with lower limb amputations experience in the rural Eastern Cape.
Jumping Kids’ biggest challenge with providing the latest life-changing technology to these disadvantaged children is obtaining funding for the necessary equipment.
“There are no statistics on the incidence or prevalence of lower limb amputations for children (or adults for that matter) in South Africa,” Ennion explains, “making it very hard to convince potential funders (and the National Department of Health) that providing children with Blade-prosthetics is justified, or even necessary.”
The UWC Physio team also met and interviewed our own Paralympic hero, world record-holder and Jumping Kids beneficiary, Ntando Mhlangu. Ntando, who is featured in a Netflix documentary about the Paralympic Games, Rising Phoenix, received his Blade prosthetics from Jumping Kids as a 10-year old, nine years ago. He is now in matric and looking to study in the US, while he continues with his sport.
“Ntando’s biggest goal is to help create opportunities for children who are in the same position that he was all those years ago,” Ennion remarks. “He gives back his time, by acting as a mentor to the little ones who are part of the Jumping Kids programme - supporting them through their first wobbly steps on their new blades, and being a role-model to show them what can be achieved with the right equipment and support.”
Ennion and Manig are proud to be associated with Jumping Kids, and will continue to support this great cause by assisting with the necessary research, and raising awareness of this life-changing opportunity that so many children with amputations are missing out on.
“Children with lower limb amputations do not suffer any cognitive disabilities, and there is no reason why they could not complete school, access tertiary education and play sports,” says Prof Ennion. “With the right tools and the proper guidance, they can be empowered to become productive members of society - and we will all benefit from that.”
If you would like to get involved, you can help raise awareness by following the “jumping_kids_sa” Instagram page, and sharing this information with anyone who has the capacity to contribute to this great cause. And if you want to know more about the work the NGO does, and why it matters, just visit http://www.jumpingkids.org.za/.