In South Africa, families with children who have cerebral palsy face significant challenges in providing adequate care, often resorting to carrying them on their backs due to the scarcity of proper mobility aids. The Boikanyo Foundation, founded by Dion Herson, is dedicated to addressing this issue by providing renovated, specialised wheelchairs known as Boikanyo buggies for those with mobility difficulties. In a recent outreach programme in Seshego, Polokwane, the foundation successfully donated 67 buggies to children in need—highlighting a pressing need that was once met in the region six years ago. In this interview with Biznews, Marilyn Bassin, the NGO’s founder, discusses the foundation’s reliance on the generosity of donors and the joy and independence these buggies bring to both children and adults alike. She also sheds light on the concerning lack of statistics regarding the prevalence of cerebral palsy in South Africa.
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Extended transcript of the interview
Linda van Tilburg (00:07:00)
Boikanyo, a Dion Herson Foundation is an NGO dedicated to providing mobility aids to children in deep rural areas. There Boikanyo buggies grant these children independence, joy, and the opportunity to experience the world. Fresh from an outreach at Seshego Hospital in Polokwane, we’re pleased to welcome Marilyn Bassin to our studio to share more about their latest efforts.
Linda van Tilburg (00:42:43)
Let’s start with the programme for the Boikanyo buggies, can you tell us more?
Marilyn Bassin (00:48:43)
We have been doing quite a bit of work in the Limpopo province. Dr. Phophi Rhamatuba met us on our last outreach and asked if we could continue assisting children living with cerebral palsy throughout Limpopo. This outreach is actually our third at one of the hospitals there, and since it was in Polokwane, six other hospitals joined us. It was very difficult for the hospitals to contact the known list of cerebral palsy children in the area.
We’ve encountered this issue before: buggies, which are specialized wheelchairs designed for children with cerebral palsy and muscle imbalances, are very expensive, and not everyone can get one. The hospitals simply cannot afford them; they cost about R20,000, and mothers often put their names on waiting lists only to eventually give up hope.
So, we went to Seshego hospital with all the partner hospitals that came along. We originally started with only 45 children that could be contacted. This number then increased to 60 and eventually to 67, and I believe word has subsequently got out that there were buggies available, leading mothers to bring their children in. We actually saw 60 children and sent home another seven buggies for one of the hospitals to fit their own children.
Marilyn (02:35:92)
It is the most unbelievable gift that you can give these mothers. Most of the children wait a lifetime. We’ve had kids, and adults in their 40s, fitted into buggies who have never had one. If they’re small enough to fit into one, no matter what age you are, you need to get one.
Our buggies are renovated, not new. We collect them from everywhere, and our Seshego Hospital outreach was absolutely phenomenal. The therapists there are incredible. It was a recycling workshop. They collected their own buggies, and we brought some to renovate together, showing the therapists how to fix them because the seat is made of fiberglass. If it’s damaged, you need to know how to repair it. The brakes—some of these buggies are 20 years old, but they can all be reused, and that’s exactly what we do.”
Linda van Tilburg (03:54.381)
That is just an amazing story you’re telling. So, how does the community cope? Do they carry these people around until you provide the buggies?
Marilyn (04:03:446)
They carry them around. I have seen grandmothers who are carrying teenagers on their backs, and it’s just not acceptable. I see this, and I think to myself, my mother never had to do that; my grandmother never had to do that. It’s not right. It’s just not right. These are the children that we’re fitting into buggies. We fully renovate these buggies. We bring up foam, we bring up tray tables, foot plates, lap straps, seat covers, and a full team that tackles the buggies that are just so damaged that, really, they have correctly been thrown away. We get them up and running again, and we send them out again.
Linda van Tilburg (04:49.871)
Well, this is a programme in Seshego, so where else have you done this?
Marilyn Bassin (04:49:871)
The recycling, we’ve been running that, teaching the local therapists how to recycle their own, since last November. But before that, we have been to so many provinces. In Limpopo, we’ve been to Thohoyandou three times. We’ve been to Burgersfort. In the Mpumalanga province, we went to White River. We’ve done a lot in KZN. We’ve done Ulundi, Nongoma, Dundee, Pomeroy, Ladysmith, Mbongolwani, Eshowe, and Nkandla. In the Eastern Cape, we’ve done Gqebeha, Fort Beaufort, and Alice; in Free State, Harrismith, Vrede, and in Qua Qua, Phutaditjhaba.
We go every three to four months, but in between, we need to rest because emotionally, we end up exhausting our entire team. There are 17 people who volunteer with us, they assist with the workshops.
The Paige Project provide us access to the buggies. They have an arrangement with Gauteng Health that buggies will never ever be bought again. Once you have paid once, they may never be sold again. So, we get them for free from them, and we work on those buggies. We work with Rotary Club of Rosebank, who have become an invaluable partner. Not only have they helped us financially raising money, but a lot of our team are actually Rotarians.
So, we have been going since 2021, and we are going to keep on going. We’re going out again in December.
Linda van Tilburg (06:54.767)
So, how big is this problem? How many people have cerebral palsy? Do you have any idea of the extent?
Marilyn Bassin (07:10.506)
Well, we don’t know. I don’t believe anybody knows how bad the problem out in the rural areas actually is. Sometimes, it’s easier just to not know, because to try and cater for all these children is going to be a monumental task. A lot of these children live up in the mountains; they live in the middle of absolutely nowhere.
When you consider that StatsSA released their figures this week and for Gauteng, the number of residents they think are living there has actually shrunk, the Gauteng government said absolutely not; that is incorrect. If you cannot even get a census correct, you’re not going to find children out in the middle of nowhere who probably have never seen a doctor and are living in a household somewhere. So, I don’t think anybody even knows. All I can say is that in our first outreach to Tshilidzini Hospital last November in Thohoyandou, 77 children were located. They asked us to come back again the following March, so we were there in March, and there were another 100 children. So, you do the maths; you can’t. You don’t know. There’s a lot. Medical care, especially out in the rural areas, is not what it should be. Even if it is, antenatal treatment isn’t what it should be.
Linda van Tilburg (08:52.276)
So, apart from this buggy project that you do, what else can you give us a rundown of what else you do?
Marilyn Bassin (09:08.296)
Our NGO is very active in Protea South Squatter Camp, which is in Soweto, where we assist a few NPOs that are up and coming. One of them, we helped to establish ourselves. For two of the three, we assist with emotional support and advocacy, and we help to put them in touch with people. They have soup kitchens, and one of the ladies assists animals as well. That’s actually how we met her. She assists injured and ill animals.
In the squatter camps, especially during the Covid-19 pandemic, we started working with animals in the squatter camp as it became apparent that for the elderly and children, there was such violence and hatred with everybody having to come and live at home in one bedroom or one room. The only thing that some of those children actually had was an animal, the puppy that they held, and these dogs would just die; they would just die, get sick from parvovirus. Nobody could help. So, this is where we’ve stepped in, and we would get an animal rescue to come there once a month to help keep these animals alive because the people needed them.
There is also an organisation of social workers which we assist with advocacy work, bringing blankets, and whatever else we can get that they need, because Protea South Squatter Camp has tens of thousands of people living in it, and they all live below the breadline.
Linda van Tilburg (11:00.355)**
You talked about how the Rotary Club and Paige Project supports you. How do you fund Boikanyo?
Marilyn Bassin (11:12.406)
We are supported by kind people and kind corporates. We are lucky enough that our transport is covered. We have always had our transport covered; we have outreach programmes, and somehow, we’ve made it. What we always say is that when we announce that an outreach is about to happen, the angels get to work, and we somehow have enough money for that outreach.
This last outreach that we just had at Seshego Hospital was a difficult one because we literally had no idea of what sizes the children were. The buggies come in sizes: baby, small, medium, and large, and there’s a huge difference in seats and covers between the different sizes. We had no idea what we were about to face. We actually had to go to unusual lengths to be well stocked enough that we could arrive with enough. Apart from 67 buggies that went to beneficiaries, we left about another 25 that, between them and us, we collected. Within the next few weeks, I’m sure those will be gone. Kindness gets us there.
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