Blog 65: The ILO past, present and future?

 In 2016 I came to Lesotho with the Welsh Government International Learning Opportunities (ILO) Program to work with children with disabilities. Somehow, I am still here in 2025 as a volunteer physiotherapist and team lead of the Physiotherapy and Outreach Program (POP Lesotho). By the miracle of What’s App I am chatting to Tina who is currently on placement with the ILO for a month in her capacity as a special education teacher. On a previous visit she started a little school for children with special needs but is having problems sourcing appropriate chairs to help them sit up. The children she is working with have cerebral palsy at quite a severe level and lack the postural control needed to sit in a normal chair.

“Don’t worry Tina we have just the thing” One of the things POP Lesotho does is make bespoke supportive seating out of recycled cardboard and newspaper, known as Appropriate Paper based Technology (APT). Currently we have supplied over 150 of these chairs with slide on tables to children across three districts in Lesotho. Such a simple thing, but life changing for the many children who need them. Without them so many of the children we visit in the community are left lying on the bed or the floor, unable to take part in the most basic activities of daily living or go to school.

“I’ll come to your school on Friday and bring some APT chairs with me that might work, and we can measure up the children that need new chairs”. Tina sends me some details and pictures of the children that I’ll be meeting, and I confer with the Malamulele Onwards (MO) ladies I work with in the district. Tina tells me one of the children cannot attend and that he has been sent away by the granny he stays with, and she doesn’t know where he has gone. “I’m so worried about this boy” she tells me. She sends me a video of him when she visited in April, a happy healthy looking teenage boy playing with a ballon, a big smile on his face. Then she sends a picture of him as she found him last week. Half the weight he was, filthy and in rags, purple bruises around his face, sitting broken in the dust, the light gone from his eyes, more dead than alive.

The contrast is sickening, “What happened?” I asked. “I don’t know”, Tina replied, “but when we went to see granny, she said she had sent him away to an aunty, and that he couldn’t come to school anymore”. I message the MO ladies and ask them to find him. This might sound rather optimistic, but they have an amazing network on the ground and by the next day they have tracked him down, living close to town. We will go and visit him on our way back from the school on Friday.

I pick the MO ladies up first thing in the morning and we set off for the mountains, up gravel rutted tracks, the boot full of APT chairs. The car is a Hillux Raider and has been donated by Glasswaters Foundation Canada for just such missions. It has massive wheels and such a high ground clearance I nearly fell out of it the first few times I stepped out of the driver’s door. It is built for the rough terrain of the Highlands and is heavily loaded with equipment and people. We pick up one of the children and his father from his house. The boy has a wheelchair which doesn’t fold so we put it up on the roof rack. I only have some APT belts to attach it with and hope it will be okay for the short distance we have to go. After about 10 minutes on the bumpy road there is a squeal from a passenger in the back seat, and I turn around to see the wheelchair riding shotgun at a jaunty angle next to the side window (Note to self I must buy some heavy-duty roof rack straps and tie equipment on properly).

We stop briefly to pick up the bukana (medical book) of the abused boy from granny, who the MO ladies have contacted and told her to bring the book to the roadside. We don’t leave the car as granny comes towards us. I don’t greet her and grip the steering wheel tighter; it is granny that is getting the grant from social development to care for the boy. She is a robust woman and even if she didn’t beat and starve the boy she must have stood by while someone else did. The boy can only crawl and use one hand, so he would have been utterly defenceless.

We arrive at the little school and meet the parents and children along with Tina’s daughter who has joined her for this part of her trip. Ellie has just qualified as a speech therapist, a professional rarer than hens’ teeth in Lesotho, and I banter with her that next year it will be her turn to come to Lesotho with the ILO.  She seems a little startled by the thought but also excited. I feel it would be of great benefit to her and POP if she could come back and help us with some training. Many of the CP children we work with have speech and language problems and swallowing difficulties. We do our best but having a specialist in this area would be a great bonus for everyone. 

Ellie helps me measure up the children at the school who all need support to sit up and have severe physical and intellectual disabilities. The Department of Social Development are supposed to supply equipment to children with disabilities in Lesotho, but we rarely find any devices given out by them, and if we do it is usually inappropriate for the individual and environment. Few children with disabilities ever get the opportunity to go to school in Lesotho and one of the barriers they face is having the appropriate equipment to help them access schools. Trying to fill this gap is one of the things that POP has excelled at. Since building a workshop at Abia High School in Maseru in 2023, we have made nearly 200 APT devices, purchased 80 appropriate wheelchairs using donations from friends of POP in Wales and recycled over another 30 wheelchairs. The workshop maintains and services all the wheelchairs the children use at the local high school and primary and makes new APT devices for the children as they grow.

Every wheelchair is precious for the mobility and independence it offers the children. The APT devices are used both at home and to help children access school. We also give out other donated assistive technology to support children’s needs, like specialist walkers and some children can now walk independently without them. Once a child no longer needs a device, we pick it up and pass it on to the next child. POP now works with over 450 families across three districts empowering caregivers with physiotherapy training and health care knowledge and supplying appropriate assistive technology for children that need it. The stats for such a small project are impressive and the impact stories for individual children equally so. Since that first visit with the ILO in 2016, it’s been a journey, as they say. 

Some of the APT chairs fit the children and we leave them at the school and measure up the children, so they can have two chairs, one for school and home. I then leave with the MO ladies to find the abused boy, while Tina goes to report his situation to the village chief. These children are so vulnerable and defenceless, especially those children living in remote areas. Obviously, a grave crime has been committed, and it must be reported, but it is unlikely the chief will go to the police, and even if he does it’s doubtful the police will follow it up.

We find the boy who is sitting on the floor at the Auntie’s home trying to eat a bowl of samp. Due to some dental issues half the food spills from his mouth as he tries to spoon it to his lips. The purple bruises on his face have faded a little since Tina sent me the picture. The boy is clean, but his body is emaciated, his spine and ribs clearly defined. It seems likely that if Tina hadn’t found him when she did, causing granny to panic and send him away, he would have probably be dead by now, beaten and starved to death. I examine him and he flinches as I gently try to establish his injuries. I give him his favourite toys, that Tina has sent with me, and he manages a small smile, it will take some time for the physical injuries to heal and much longer for the psychological scars to fade. I give Aunty large bags of samp, beans and pumpkins to feed the boy up until the grant from social development is transferred from granny to Aunty. We leave promising to be back to check on his progress in a few weeks.

I drop the MO ladies off and then call in to check on the build of our second Assistive Technology Center (ATC) at the Technology College in Leribe. It’s being built through a grant from Glasswaters Canada and is a huge investment to supply the children of Leribe with assistive technology, currently all supplied by our small workshop at Abia High School. When I arrive, the builders are lifting a massive steel girder onto the roof, weighing tons, to make the apex of the building. They are ingeniously using a system of winches and a man up a ladder, to achieve this feat. It looks a very scary operation but I’m sure they know what they are doing. I silently thank POP co director, Joel, for coordinating the build and securing supplies because it requires much more financial dexterity and patience than I have.

I go back to Maseru to do some training at the workshop with our latest batch of new recruits from the Lesotho Defence Force (LDF). I have had many surreal experiences in Lesotho but probably near the top is standing with a cardboard chair in the board room of the LDF in early January this year asking the Commander in Chief and a dozen of his most senior officers for help. The LDF is mandated not only to defend the country but also to serve the people. It is my experience that they are fulfilling this promise.

The Commander in Chief understood the need for the work POP is doing straight away and gave it his blessing, also telling me there was a great need for POP to go to the Highlands and reach out to the children and families there. I agreed and said I would put it on my very long list of things to do. By June we had purchased the Raider and by August were visiting the Highlands. By February the first two soldiers were on placement, and now the next two have started and will be with us for four months until December. They provide valuable staff for POP and in return they get training, tea, coffee and sugar and make POP more sustainable.

As well as making APT and learning to repair wheelchairs the soldiers are learning about working with children with disabilities, of which they have limited experience. Along with the theory I am trying to get them to understand the importance of play and fun when working with children. I well remember on the ILO in 2016 asking the children at Saint Angela residential home what they knew about physiotherapy, and they mimed people torturing them. The physiotherapy room I set up then is still in operation and we use it 2/3 times a week as well as doing outdoor games and sports. We go across for Monday’s session and I’m not sure the elderly sergeant is buying into today’s dance and movement session but the younger private is certainly getting into the groove and shaking his hips with the kids.

For the kids these sessions are a chance to get fitter, have fun, build confidence and do activities that other kids take for granted. These children all go to school at the next-door mainstream primary and while education is supposed to be inclusive in Lesotho the reality is somewhat different. POP has put a great deal of effort into improving the practicalities of inclusivity from sporting activities to the supply of appropriate wheelchairs, to putting in pathways to make school more accessible. It was POP that built the first pathway at the primary so that the girls could access the disability toilet that UNICEF had kindly put in but somehow had forgotten to build a pathway so that wheelchair users could get to it.

Working with the ladies from MO in the community is another way that POP operates to make the project more sustainable. MO is a South African foundation that trains mothers with CP children to train other mums with CP children in the basics of care. They give invaluable practical and psychosocial support in an environment where disability often carries stigma, and the children are hidden away.  I link up with Mme M the following week who covers Maseru district. She is an absolute diamond, ever resourceful, calm and reliable, and manages to stay upbeat whatever situation we find ourselves in. Mind you even she goes pale, under her dark skin, as I nearly manage to drive the Raider off a cliff.

I was just telling her how much safer I feel in the Raider, compared to our other vehicle, an old X-Trail, as we approach a very steep part of the gravel road we are driving on. No problem I think confidently changing down gear, but the Raider starts to slip and then goes into a wheelspin spraying gravel everywhere. It is at this point I feel I should be using the diff lock, but I have forgotten where it is and what to do. The car is sliding backwards towards a drop of several hundred meters, and I decide to accelerate and pull forward using some dodgy clutch work in first gear. We survive with a great deal of revving, and I arrive at the top of the hill feeling slightly stressed. I call my friend at the local garage and recount the tale, my heart still pounding. I find out where I’ve gone wrong and make a note to self, that in future I need to stop the car and engage the diff lock before tackling challenging terrain.  

The children we are visiting today all have severe disabilities and each case seems worse than the last. We arrive at the penultimate house, find mum is not there and we are let in by a neighbour. The boy has spastic cerebral palsy secondary to hydrocephalus, and in proportion to his body he has the biggest head I have ever come across. We have worked with him and the chaotic social situation mum lives in, for a couple of years. We took him to hospital and paid for his treatment when mums abusive boyfriend broke his leg, we supported mum to get him a passport and paid for him go to Bloemfontein to treat his hydrocephalus, but the medics said he was too difficult to treat. We have given mum food aid and seedlings to grow vegetables, but mum continues to lurch from one crisis to another dragging her children along with her.

I cast my mind back to when we were called out over a year ago by mum to find her and her son and what seemed like half the village, crammed into a dark hut. It didn’t take long to establish that the boy’s obvious pain and distress was caused by a mid-shaft shear fracture of the femur of his small leg. After stabilising the break as best as possible we got him and mum into the back of the car. Before taking him to hospital we had to go via the shops to buy nappies and food, so mum had supplies to stay and look after him while he had an operation to fix the leg. The long and stressful journey with the boy crying in so much pain in the back of the car is still etched on my memory.

Today the boy is lying on a filthy urine-soaked mattress pinned to bed by his enormous head, he manages a smile as he recognises us. It turns out Mum isn’t here because she has gone to court as her daughter, who also has a disability and we work with, was raped by a villager in front of her brother, while mum was away trying to find work in South Africa. I feel overwhelmed but Mme M, ever practical, changes his clothes and together we lift him out of bed. I lift his head with both hands and it’s like carrying a heavy boulder with the weight of the fluid in it. There is a large dent left in the bed from where boys head has been.

We change the blanket and lift him back on the bed leaving the neighbour feeding him something that looks rather gross, found in a bowl in a bedside cupboard. Mum left the house at 6 o’clock this morning and we are the first people he’s seen since then and he is probably starving. We drive past the airport on our way to our last visit and I briefly consider jumping on a plane and flying back home. Days are not always like this, and I know how life changing the project has been for hundreds of children and their families, however sometimes the brutality of life here and the suffering of these children gets too much.

Tina comes back to Maseru, and we find time for a cup of tea before she flies out. She would like to spend more time in Lesotho but presently can’t see how to juggle the logistics to make it work. Looking back, I’m not sure how it all worked out for me. I was drawn back every year after 2016 with the ILO and Dolen Cymru and then at the end of 2021 took a leap of faith, landed and have been resident here since. It was almost like the waves parted and it was meant to be. As I draw nearer to the end of my fourth year of residency in Lesotho, there is still so much to do to try and make the project more sustainable. There is the ATC center to launch once the building is finished, training with local stake holders in Leribe to sustain it, more training with the soldiers of the LDF, more outreach visits to children in the Highlands, and we still live in hope of partnering with ministry of Health, or Social Development or Education, or all three of them!

Co-Director Nelson, more grounded than me, advises to keep expectations low and the fact that the ministries are even talking to us is progress. Trying to work with the ministries has been frustrating and not a very productive process so far. While we continue to reach out to them, we have found a bottom-up approach with parents, schools, the LDF, technical college and community groups on the ground has yielded much better results. I get back from Tina’s and check in with the soldiers at the workshop, make phone calls and try to gently nudge people into action. We are building a better future for the children POP works with, and as the ripples from that first visit in 2016 with the ILO continue to spread, I’d do it all again. I wonder if Tina will come back and if her daughter Ellie will embark on a new journey with the ILO and where that might lead.

Blog 64: Ball and Chain

We are taking one of the girls from Saint Angela to hospital to review her prosthetic leg which is used to extend her shortened leg so she can walk. It’s now too small for her and broken. I have seen a variety of such devices in Lesotho, which when considering the lack of resources available, vary from ingenious to torturous. The social worker calls us and says there is another girl with a similar problem and can we see her as well. 

This girl is 17 years old but has only just started at high school. Unlike primary school, high school is not free in Lesotho and parents must either pay school fees or seek help from the department of social development. After all these years this girl has finally got support from social development and a chance to go to high school by being a resident at Saint Angela. We find she has gone to church with the school and as we cross the football field towards the church Ntseliseng points out a group of students returning and a small slight girl trying to keep up with them, “That must be her”. 

The girl has a massive built-up shoe, which although putting her in touch with ground she is struggling to drag along. It must weigh well over a kilo and on top of the build-up there is a small shoe, in which her tiny foot sits. The shoe looks so heavy and awkward she might as well be dragging a ball and chain along with her. 

We ask her to come back to the workshop so we can find out more about her story and do an assessment. Ntseliseng translates, she says the girl was born normally but when she was around two she was crossing a river, balancing on a wrecked car, using as it as a stepping stone, and lost her balance, falling into the car. It was when she was dragged out that she sustained her injuries. 

I ask her to take the shoe off and there is a noxious smell of rancid flesh. Her lower leg is so withered I can easily encircle it with my thumb and finger. The foot is paralysed, the toes tightly curled under wasted sole of foot where the base of the metatarsals bear hardened callouses and sores. The tiny shoe she is forcing her foot into is much too small and every step she takes must be agony. She is ashamed of her foot and likes to keep it covered up. 

The fingers of her right hand are deformed, while the muscles of the left shoulder complex are wasted, weak and the skin discoloured. I’m unsure of what her diagnosis is but the story of her falling into a car in the river does not ring true. It is also apparent that her prothesis is doing more harm that good. 

The next day we take her and the other girl to see the orthotist at Q2. He is over an hour late for the appointment, so it gives me plenty of time to trawl through her Bukana. These are small little medical booklets people are given by hospitals when they are born. Fortunately written in English they contain varying amounts of useful medical information. I can see she’s had a number of past appointments with doctors who note a deformed leg which needs a prothesis. 

Then I decipher a scribble which notes “polio leg” and that’s it! I’m sure this doctor’s observation is correct, and everything falls into place. A virus that may cause paralysis, especially of one leg, mainly affecting children under five. Its not something I’ve particularly come across before with vaccinations programs being quite successful in eradicating it, but there have been outbreaks in African countries in the past. It possible that the girl’s strange story of falling into a river has been the families way of trying to explain how a normal girl could be struck down by an unseen virus. 

Further follow up phone calls from the hospital find out that whoever made this terrible shoe is making another one for her, being paid for by social development. Maybe it will be a better fit than this one, but for the moment I don’t think she can carry on with the dreadful device and the pain and damage its causing to her foot. I decide to try her on crutches and immediately the excruciating pain in her foot stops. She can walk quite well using the crutches by swinging through on her good leg. It will give her damaged foot a chance to heal but is not totally ideal as her weakened shoulders ache with the effort. Hopefully in a few weeks’ time her muscles will strengthen and adapt. 

The more immediate problem is her shame over her small, withered foot, which she wants to keep covered. We go shopping and she chooses a soft black ankle boot to cover it. Further conversations with Ntseliseng over the next couple of days reveal the girls mother is dead. She lives with granny who finds her a burden and was only too happy to send her off to Saint Angela, but basically with virtually nothing, barely any clothes and no toiletries, she’s had to borrow other children’s. 

I feel so angry and upset by the mountain that these children with disabilities must climb to get to school. Hardly any of them get the opportunity and the few that do arrive have endure more hardships and humiliations. Another shopping trip is due. She needs a school rucksack to carry her books, soap, towel, and Dettol to clean and dry her foot, toilet bag, Vaseline, flannel, toothbrush and toothpaste. School socks, pens, pencils, rubber, sharpener etc and of course a secret bag of sweets stashed away for emergencies.

The whole lot, including the shoes, only comes to £35, its such a small amount but will make such a difference to her.  I use part of a donation that a kind friend sent me to help another child a few weeks ago. He was expelled for not being able to use a spoon to feed himself and I was trying to find somewhere else for him to stay and someone to care for him. It’s a long story and makes me too angry to repeat it. Anyway, the outcome was I didn’t need the donation in the end so I use some of it to help the girl. 

She comes to the workshop, and we show her how to wash and care for her foot and give her the rucksack filled with goodies to make her difficult life a little easier. She is wearing tracksuit bottoms and a T shirt and looks so young and innocent now she is no longer dragging the heavy painful shoe around with her. She thanks me and wants to say more but language and emotions stop her. She doesn’t need to say anything because I can see it in her eyes. The weight of her disability and the ball and chain curtailing her freedom has lifted just a little and hopefully will help her start her secondary school opportunity with a lighter step.  

Blog 63 A remarkable man

We are driving through the highlands to Paray mission hospital in Thaba Tseka, set in the heart of Lesotho. Past the traditional grass thatched huts, the small cattle stations where the herd boys stay while guarding their flocks and ever onwards to the distant folding mountains. 

I am going to meet a legend, Wolfgang Fasser, also know as Ntate Thuso, a blind physio from Switzerland who has been coming to Lesotho since 1981. Over the last 40 years he’s been on a mission to spread the word about how desperately the people here need physiotherapy and how few physiotherapists there are, especially in the highlands of Lesotho. You can’t train to be a physiotherapist in Lesotho and the handful of professional physiotherapists there are tend to be based around the government hospitals in Maseru. 

 

Undeterred Wolfgang decided to set up a training program for physiotherapy assistants at Pary hospital and went on to inspire the building of a physio centre there. He comes to Lesotho once a year for around two months to run courses for hospital based workers to train as physiotherapy assistants. The training is focused around the basics of physiotherapy exercises as Wolfgang says “movement is life” and he uses these principles to treat neurological conditions like stroke and respiratory problems like TB. 

 

“Wolfgang what brought you to Lesotho?” I ask as we chat on my arrival. I’m thinking that being a blind physio is surely difficult enough without deciding to to come to Lesotho with all its health and infrastructure challenges, poverty and cultural differences. “I had a dream to come to Africa” he smiles serenely. Well, I know that feeling but I’m not sure it would have been top of my list of things to do if I’d been blind, Wolfgang, though, “see’s” things differently.

 

I read further about him using online articles. A genetic condition called Retinitis pigmentosa robbed him of his sight as a young man in his twenties, but its heightened an extraordinary ability empathize with the patients he treats.  “It is not my goal to live like someone who can see, I want to be just how I am,” he states in the article. I observe from our first meeting he is definitely a man who is comfortable in his own skin, assured in his abilities as a therapist and passionate in his mission to bring the benefits of physiotherapy to Lesotho, particularly those living in poverty in the remote highlands. 

 

When he first came to Lesotho only two of the 18 hospitals in the country had physiotherapists. Now with his training and persistence 16 hospitals have at least a physiotherapy assistant, some even a physiotherapy room. He has also tried to initiate a training school and program to train as a fully qualified physiotherapist in Lesotho, but has yet to be realized due to lack of support from the minister of health. 

 

Wolfgang says there is no political will to support a physiotherapy school in Lesotho or increase physiotherapy professionals at the hospitals. If government ministers want physiotherapy they go privately or call the army physio. Among the upper echelons there is no empathy for the physiotherapy needs of those living in poverty. He also thinks the nursing profession are not supportive of such a move because of the possibility of losing some of their budget to providing physiotherapy to the wider population. 

 

Wolfgang believes that persistence will finally win through by training from the grassroots up. He sets about the task in hand with today’s new intake of students. He encourages us all into the exercise room to stretch after our long journeys. His voice is calm and lilt’s in a sing songy way with his German accent and we take off our shoes and follow him into the spacious room. The white net curtains gently billow in the breeze from the open windows. It all feels very Zen until I lie on the concrete floor with a rough carpet which does nothing to soften its hardness. I think I could do with a yoga mat but only a bright coloured cotton cloth is available to lie on. 

 

Wolfgang assures us its much better to lie on a concrete floor because it allows us to feel our body better, the man definitely has a sense of humour. Even though he’s 68 he is a lot more flexible than the young candidates in front of him who are 30/40 years younger. I’m getting close to 62 and not so far behind Wolfgang’s ability. There are lots of stretches lying on the floor with opposing limbs across the mid line, very useful for neurological conditions, mixed in with some yoga postures. 

 

All is going well until we are sitting crossed legged on the floor and Wolfgang stretches out his arms in front of his chest and casually goes straight into a standing position. We all try and follow his example but remain stuck to the floor. None of us can do it. Wolfgang says its a matter of brain gymnastics and we need to visualize the movement, but it doesn’t to help me. Clearly my brain gymnasium is not very fit and Wolfgang is a man of many talents. I can’t wait to learn more from him the next day. 

 

Morning starts with prayers, a song which everyone joins in and effortlessly harmonizes, before we launch into more gymnastics on the concrete floor and some serious grunting and painted expressions. We then cover the theory and practicals of basics physiotherapy with stroke patients and peripheral joint mobilizations, before limping back to the hotel. 

 

The following day I am already at the physio centre when Wolfgang arrives taping his folding white cane in front of him, his head crowned by a splendid red beret. It used to be black he tells me, but had to be changed after after living in Italy where black berets are associated with fascists. Inside the physio centre he prefers to slide his hand along the the wall to feel his way to the exercise room. After our morning exercises more teaching and practicals follow, Wolfgang demonstrating and guiding us through the techniques in his calm and thorough manner. 

 

I give a couple of talks on paediatrics physio and in the two and a half days a wide range of subjects covered. Its a lot of material for the physio assistants to absorb, but they have to be generalists. There is not the luxury of resources to afford specialism here, however armed with some basics these physio assistants skills can make a huge difference to patients . 

 

After the final session on Saturday I drive back over the mountains to Maseru with Ntseliseng and Wolfgang in tow. What he has achieved in Lesotho is remarkable, even before considering he’s blind, but he has never let that define his life or his ambitions. I drop him off in Maseru, he’s been summoned to treat a member of the royal family. He steps out of the car, places his red beret on his head and follows his calling, rich or poor are all treated equally. He’s already come a long way to achieving his goals and whatever challenges the future holds I don’t doubt his courage, dedication and indomitable spirit will overcome the obstacles that lie ahead.

Blog 62: This is where I go to church

It’s Sunday morning and I’m doing a couple of outreach visits on my drive back to Maseru from Leribe. I am with a co-worker from Leribe, Mme Koloi, and we stop at small hut close by the road. There are six children living in the two tiny rooms with their granny. Their mum has run away, and Granny is a tour de force, caring deeply and joyfully for her grandchildren. She works hard every day to provide for them with food, shelter, and comfort without a trace of resentment about the situation she finds herself in.

The children are aged between 3 to 15, the youngest has hydrocephalus and is struggling to sit up and control the heavy weight of her large head. We have given her one of our APT cardboard chairs to support her and use the table to improve her hand skills by playing and eating. Granny clears away the mattress on the floor they sleep on and brings out the APT chair and table for the little girl.

I’ve brought her a couple of books and some crayons, but she is far more interested in the bag of Simbas, (crisps) her older sister has brought her. The siblings gather around and try to encourage her to use the crayons, but clearly Simbas top crayons every time. Her older sisters are very kind and gentle with her, carefully positioning her head and making sure she doesn’t choke on her snacks. Granny roars with laughter and you would never know this is a destitute family living in dire circumstances. They seem richer and happier than most families I know who have material wealth and comfort beyond their dreams.

We leave after a photo shoot which includes barefoot granny’s toes nails which she has proudly painted bright red. More laughter erupts as granny strongly advises me to do the same. We jump in the car and head off to the next visit.  Before we get very far Mme Koloi suddenly asks me “Where do you go to church Mme?” As it’s Sunday morning and a large proportion of Basotho will normally be at church, I guess she wonders what I do. Without hesitation I say “Here!” She looks puzzled and I elaborate. “Here!” I repeat “When I’m out on visits. With people like that granny” I point back down the road. 

She laughs a little and I’m not sure she quite understands me, but I am clear in my own mind that I am more likely to get closer to God in the household we have just visited than in a church. Mme Koloi guides me to the next home visit. She has sent me a video of the boy a few days ago and I fear what I will find. The boy is sitting on the ground propped up against the wall when we arrive. Dad greets us with a smile of relief, but I can already tell it is unlikely I have any good news for him. The boy is unable to stand and follows us in, waddling crouched down on his haunches. He’s 17 and hasn’t been able to walk for the last three years and still doesn’t have a diagnosis. The dad says his younger brother is now starting to develop the same symptoms, stumbling, and struggling to walk. My heart sinks further and I ask to see the brother as well.

I assess the younger brother getting up and down from the floor. He has Gowers sign and can’t get up the single step without using his hand to press down on his leg and straighten it. The older brother can’t actively extend his legs at all, but he still has some power in his upper limbs and could self-propel a wheelchair if he had one. Mme Koloi translates for me, and I explain that my impression is that both boys have muscular dystrophy, probably the most common type, Duchenne’s, DMD, and that it’s a genetic progressive muscle wasting disease. I’m not sure how much dad is taking in and write my diagnosis in their Bukana’s (small medical book). I tell the younger brother to take care walking, because he is falling a lot and to try not to get too tired or upset if he can’t keep up with his friends. I tell the older brother I will get him a wheelchair as soon as I can.

Dad is overcome with gratitude, that finally after three years his son will get a wheelchair and a bit of improvement in his life. He excitedly asks the younger brother to fetch something, and the boy reappears moments later clutching two carboard top hats and a book with beautiful detailed pencilled drawings in it belonging to the older brother. The boy has become shy and withdrawn as his disability has progressed taking away his independence and dignity. He hasn’t been able to go to school for years and dad has had to make him a special small toilet as he can no longer pull himself up onto the family long drop. Yet, despite everything, he has been using what ability he does have with his hands to draw detailed pictures and make carboard top hats. I smile at his inventiveness and tell him to carry on with his brilliant work and I will get him a wheelchair with a desk to help him. 

We leave and Mme jumps in a taxi to go back to Hlotse while I carry on to Maseru. The second visit has confirmed the thoughts I had earlier, that this is where I go to church. Here amongst the poverty and adversity you can find true kindness and courage and all that is good in humanity. The car radio is on, and the world service relays the latest horrors in the Middle East. I turn it off and gratefully reflect on this morning’s visits. 

Blog 61: Improving the picture

Its 3pm at Butha Buthe cerebral palsy clinic and I haven’t had anything to drink or eat since 7.30am this morning or even been to the toilet. In fact, I have barely moved since I arrived here this morning and started assessing the children. As well as some follow up appointments 16 new children have turned up, none with their Bukana (small medical record booklet) and most accompanied by care givers or grannies who don’t know the child’s date of birth let alone what medication they are on. All have come by public transport and some from a long distance away, which is why I am soldiering on without a break, so they can hopefully get back home before dark. 

My assessments are getting shorter and are cut down to the bare minimum, whether the child can move, sit up and needs assistive equipment, particularly wheelchairs or APT chairs. Many of the children have a type of cerebral palsy called dystonia, causing uncontrolled movements, making them to push back into extension, so it’s very difficult for them to sit up. There is a sad 6-year-old boy with sunken eyes, limb deformities, terrible contractures and callouses from where he has been dragging himself across the floor, a one-year-old girl who is blind and continually rubs an empty eye socket, lastly a very forlorn looking three-year-old girl who walks in with a slack jaw and her mouth open. 

 

I look down her throat and see a gaping hole revealing an untreated cleft palate. “Does she have a problem eating” I ask her granny. Granny says that the food sometimes comes out her nose and that she has taken her to both major hospitals in Maseru but neither offered her treatment or a referral to South Africa. Since she doesn’t have the child’s Bukana I am unable to verify what has gone on, but this is a common birth defect which I have never seen untreated before as in the UK it usually receives corrective surgery as soon as possible. 

 

I eventually finish and leave with a long list of children who need APT chairs and wheelchairs. A lot of the equipment required is for quite complicated problems and I don’t know if I can supply it all. The supply and demand for assistive equipment between the three districts is like a giant jigsaw in my head. I am constantly adding new pieces as I bring in new wheelchairs and APT chairs, while I swap around old pieces as children grow out of equipment and I take it for repair and then give it out to children that it fits and can benefit from it. 

 

I return to Maseru, trying to focus on what I can offer these children, and not be overwhelmed by the lack of health care available in Lesotho. I have now assessed hundreds of children with disabilities but often it’s only the start of an uphill battle to get them the treatment they need, especially if they require referrals for hospital treatment. My experience of government hospitals has not been good following the neglect and appalling treatment of Sello at Motebang hospital when he was admitted for grade four pressure sores. More recently taking two children with muscular dystrophy to Q2 hospital in Maseru the most pressing question the orthopaedic doctor, Dr M, wanted to ask them was if they believed in Jesus. Fortunately, they both replied yes and received his blessing, but I was hoping for a more objective approach.

 

We return to see Dr M with a seven-year-old with metal work in both legs after corrective hip surgery in 2021 left her with severe leg shortening and constant pain. Ntseliseng goes with the girl while I accompany an older child to a different clinic. I get back to the car and there is still no sign of Ntseliseng, and I call her to find out that its mayhem at Dr M’s clinic and she’s no idea what happening. I look up and see the very man walking by the car and heading down a dusty path into the trees. “He’s right here” I tell her and chase after him. He looks surprised to see me and says he won’t be long and continues towards the trees. I’ve no idea if he’s going to talk to them, or perhaps imbibe in something reviving, certainly his gait is rather wandering. After a brief sojourn he returns to his clinical duties and Ntseliseng manages to grab him to look at the unfortunate 7-year-old. He gives her his blessings but more practically an X-ray referral.

 

Now armed with the X-ray and with Ntseliseng as back up, I take the girl to Queen Mamohato memorial hospital where she had the original operation. She was supposed to be followed up soon after this, but her mum and dad divorced, and dad took the children to stay with him and refused mum access. Mum eventually managed to kidnap her daughter and took her back home but two years later after the originally operation there has still been no follow up of her surgery. I fear things have gone badly wrong with the internal fixation of her bones causing her present deformity and pain. 

 

Queen Mamohato hospital is relatively new and was built in partnership with private sector funding. Unhappily the government failed to meet its funding side of the bargain and after a few years the private sector withdrew its support with subsequent administration chaos. Record keeping now seems to be handwritten and rather unreliable. After queueing for two hours, we finally get to see a doctor who decides the girl not his problem and should be passed onto the doctor who did the original operation and is presently in theatre. Her X-ray is on a CD and the doctor can’t open it to view so he instructs a junior doctor to find a computer to reveal its contents.

 

Another hour passes, nothing has happened and worryingly we are approaching lunch time and the danger zone of post lunch inaction. I press for answers from one of the pseudo doctors who is managing to look busy without doing anything. The art is to sling a stethoscope around your neck and go in and out of various examination rooms which have no patients in them. She eventually comes back with the X-ray picture on her phone, but it is now lunch time and I wonder if all is lost. I give another hard stare to the pseudo doctor she passes; we have now been waiting for over 4 hours with a seven-year-old in a wheelchair. 

 

Suddenly she calls me into the office and declares she has decided to admit the girl onto the ward along with the chilling news that we must stay with her until mum arrives. Fortunately, Ntseliseng manages to get hold of mum who is at work, and she agrees to come immediately and bring the necessary supplies for what might be a long stay in hospital. It takes her another hour and half for her to come. I make good use of the time by washing the girl’s wheelchair with my face mask, as its rather muddy and there are no paper towels by the sink or toilet paper in the toilet. I also ask the ladies on the ward desk if they know if the hospital does cleft palate operations. They direct me to a surgeon in an office who says know they don’t but occasionally an organisation called “Smile Train” comes to the hospital with specialist doctors who will try and operate on as many children as they can who are on the hospital cleft palate list. He has no idea when the next Smile Train will arrive, but I need to get the three-year-old on the list to see if the team give her the treatment she desperately needs. 

 

Mum arrives and both Ntseliseng and I breath a sigh of relief. I warn mum not to let the hospital staff take her daughters wheelchair away which we have supplied. I doubt if there are many, if any, children’s wheelchairs at the hospital and we are unlikely to see if again if staff decide to borrow it for another child. It feels like we have got through a labyrinth of appointments to get the girl this far, but she has yet to have the operation and find out whether all the problems that have accumulated over the last two years from her previous operation can be sorted. As to whether the three-year-old will get the surgery she needs for her cleft palate this remains another unknown. 

 

The following week I am back down in Butha Buthe following up children and giving out equipment. I have a small, blue recycled wheelchair for the sad 6-year-old boy saw in clinic a few weeks ago. It’s been rebuilt out of two broken wheelchairs, and I hope will give him some mobility, independence and position him better to reduce his contractures. He lives in a single room in a squalid area of poor housing along with an aunty and two of her children. I explain a little about the wheelchair and ask aunty to put him in it. He is sitting on the bed, and she grabs him by the arm and drops him in the chair like a sack of potatoes. She clearly has no affinity or liking for the boy.

 

With gentle encouragement he soon learns to move the wheelchair about on the small area of linoleum floor despite the contractures of his hands. I praise him and he cracks the smallest of smiles. I give out some soft night splints to try and stop his contractures getting worse, tell him to keep practicing using his wheelchair and we leave. When we are back in the car Mme Maja tells me that aunty is very angry with the mother who left months ago to supposedly find work and she has barely made contact since then. The dad left years ago and now the boy has nothing and no one, just an aunty who resents him, a painful, contracted body that doesn’t work and life in a small dark room sitting on a bed with no hope and little future. It heart breaking and I can only hope the wheelchair gives him a chink of light in the darkness.

 

We move on and I give out two further wheelchairs to children who are in wheelchairs which are much too small for them. Since they both spend all their day in their wheelchair it’s a huge improvement in their quality life and I can recycle both the wheelchairs they have grown out of. After a conversation with our tech back at the workshop I pick up three more broken wheelchairs collected from social development. I feel positively rich as I drive away with all the bits of wheelchairs clanking in the back of the car while I work out which children will benefit from the wheelchairs when they are repaired. 

 

Added to the second-hand wheelchair bonanza are the 15 new chairs I have brought in from South Africa so far this year, some of them adapted with the desks we make to add extra postural support for those children who need it. Meanwhile the workshop team are cracking on with all the APT chairs that are currently on order. They are now producing chairs much more efficiently and of much better quality due to the training they’ve received, the facilities the new workshop offers and getting the students at Abia involved in the production of the chairs. There’re are no easy solutions for the huge health challenges of Lesotho that’s for sure, but we are putting in some of the pieces of the health care jigsaw puzzle where we can and slowly improving the picture. 

 

Update: The 7year old girl has been for her operation today. 

We are pressing for the little boy with the blue wheelchair to be admitted into a residential school for children with disabilities where we feel he will receive better care and a future 

Blog 60: The sounds of March

“Whack”, I wince as much as the child does whose fingertips are being canned for being late for school.

“Ntate what exactly is happening this morning when the British High Commissioner arrives?”

He pauses before replying as another child runs the gauntlet and tries to slip inside the school gate without being noticed. Unfortunately for the child the teacher is not distracted from his early morning duty to punish unpunctual miscreants

“Whack”, “Don’t worry Mme Jan it will all be sorted I think” 

“But the visitors will be arriving from 10.30am, and nothing has been organised yet”

“Whack”, “Don’t worry Mme Jan it will be okay”

 

My stress levels are rising. The British High Commission (BHC) will shortly be arriving to open the new APT and wheelchair training centre which they funded with a grant award, and we’ve built at Abia high school this year. I asked the high school principal to organise an appropriate list of guests and media for the opening but it’s all very last minute (like I was sitting in her office yesterday while she was on the phone to the ministry of education suggesting the minister might like to come giving him less than 24 hours’ notice)

 

The APT centre is all decked out with a red ribbon to cut at the entrance, a flower bed planted and the APT chairs on display, while the school is looking like a war zone. The school “hall” has a roof and a concrete base but no walls and is filled with broken desks and discarded bricks. I decide to calm myself by running over to the primary school to make sure the primary principle is coming, who I fear is another victim of the last-minute guest list. She is in her office and says it’s too late for her to come because she is in her ordinary clothes, and it would be too shameful for her. She sees the disappointment on my face, “Okay Mme Jan I will come but only for you” It’s a big deal and a big sacrifice because Basotho ladies usually spend hours doing their hair and clothes for such an occasion. 

 

Relieved I run back to the High School to find at 9.30am it was decided to cancel all lessons and hundreds of students are running around everywhere, moving the broken desks from the hall, bringing in seats for everyone and digging and tidying the grounds like a horde of ants. Remarkably we only start 15 minutes late at 11.15am and everything runs quite smoothly. The BHC makes a speech, cuts the ribbon to the workshop, admires the chairs, watches a bit of live action APT and meets the children. 

 

Euphonious African singing fills the air as we enter the school “hall”. The few glitches go unnoticed as the school choir mesmerises all the visitors with their wonderful harmonies and dancing. The African skies are framed perfectly by the roof with no walls and the BHC are so impressed by the choir that they invite them to be part of the commonwealth choir celebrating the Kings coronation in May. Hurray! What a result! Not only has the BHC project has been successfully completed but Abia High School are on the map. No stress at all 

 

https://www.youtube.com/watch?v=a_VZ-2hH_Po

 

 

The roll of thunder, crack of lightening and lash of heavy rain accompany us we carry an assortment of food parcels up a slippery hillside. I have thought to give the other two ladies extra clothes but forgot to change my flip flops before coming out on this mission. I wonder if I will break my ankle or get struck by lightning first.  

 

Yesterday I took a girl home who I found out on the road in her wheelchair being pushed by the care father at Saint Angela. She was sick and being sent home because Saint Angela had no food or medicine to give her. Today her cousin has returned and has been waiting outside my flat to tell me there is no food at the girl’s house and she hasn’t eaten for the last 24 hours. I’ve got the car as close as I can, but the track runs out and we are now on foot. Yesterday the mother came to meet us and carried her daughter on her back for the final part of the journey, so I haven’t been to her home before. 

 

A black tin shed appears out of the apocalyptic storm clinging onto the hillside, and we crash through the door slamming it in the face of a snarling dog that threatens to devour us. The girl is lying in bed with her mother, and they are both weakly coughing under the covers. The girl has TB, and it sounds like the mother does too. TB, disease associated with poverty and HIV, both rife in Lesotho. I have brought enough food for about a month, after that I don’t know what will happen. Many of the children at Saint Angela live in equally challenging circumstances and it would present me with a dilemma if all their relatives start turning up on my doorstep asking for food. For now, the girl can have a hot meal for the next few weeks and the immediate crisis is solved. We leave in the rain, its dark by the time I get back and just another day in Lesotho   

 

Thud, thud, thud the sound of earth on wood, earth on a coffin. Mournful singing surrounds the grave of Sello who at last has been laid to rest. He has been dead for some weeks, but dad was thrown into prison trying to cross the border with an out-of-date passport. The family have waited for the funeral until they could raise the fine for him to be released to attend his son’s burial. There are hundreds of people attending from the village as well as relatives. Funerals are big in Lesotho, and it seems like more money is spent on the dead than the living. I am worried about how this poor family will feed all these people, but Mme Maja tells me not to worry as they belong to the village funeral association who will pay for it. 

 

I feel numb and try not to dwell on what Sello suffered. At last, the grave is full of earth, the singing stops and there is only the sound of silence. The sounds of March and extremes of emotion are over. It’s time to move on to April.  

Blog 59: Legacy

 After being in Maseru for the last two weeks I finally manage to escape and dash back down to Leribe to pick up the pieces there. Top of the list is to see the boy with terrible pressure sores, Sello, who has deteriorated further and has been in hospital for the last week. It’s a long day as we go via South Africa to fix the car and pick up more wheelchairs. We get up at 4.30 am and must negotiated customs, a power outage, and some unpleasant lorry drivers, who are shouting at us and telling us we are in the wrong line to present our custom documents. It is the only line to present papers, but we are the only car, and the lorry drivers seem to think they can intimidate us and move up one place in the queue. 

 

Mahlomola is half the size of the aggressive fat lorry driver leading the pack. I feel myself getting angry and am tempted to confront the bully but don’t want to be crushed by the juggernaut he is driving. Just as we reach the front of the line, the vitriol psyches Mahlomola into turning around. Fortunately, the custom officer in the booth sees what’s going on and waves away the lorry drivers away and processes our documents. We are saved but by the time we get back to Leribe it is dark, and we are both shattered. 

 

I am up first thing in the morning to go to hospital and visit Sello. He has the heart of a lion, but from Mme Maja’s reports it sounds like his body has finally given up. He has pressure sores everywhere and has stopped eating. As I get ready, I receive a message from Mme Maja, Sello passed away around 6am and I am too late. He went through terrible suffering, and I feel relieved I don’t have to witness it anymore and he is finally at peace. We go to hospital to see how we help mum. Dad was working in South Africa and tried to make it across the border a couple of days ago, but his passport was out of date, and he was arrested and sent to prison. Now mum must do all the things that he would have organised as the head of the household. 

 

When we arrive, she is seeing someone from social development to arrange paying the hospital bill. We go to the ward. Sello’s small body lies on the bed under a hospital blanket. The ward doctor is tamping because she says his body has been there too long and that he should go to the mortuary. Mum wants him to go to the town mortuary, not the hospital mortuary, which takes a bit longer to organise. We leave the grumbling unsympathetic doctor and go into the room to spend a few quiet moments with Sello. I tell him I’m sorry I couldn’t do more and I’m glad he is now free to fly away from the body that tortured him. I imagine his spirit soaring into the blue skies, making beautiful patterns as it glides into infinity. 

 

We come out the room and mum appears, clearly running on automatic pilot. She still needs to organise the mortuary, so we go on an outreach visit and deliver a wheelchair to a girl and her delighted family. It’s all a bit surreal. By the time we get back Sello has gone to the mortuary, and we pick up mum to take her home. I park and our sad procession walk down the familiar overgrown path to the hut, mum marching resolutely in front, Mme Maja with her umbrella up to protect her from the sun, still wearing her fluffy carpet slippers that she ran out in this morning, and finally me. 

 

Outside the dilapidated hut an old man dressed as a cowboy sits on the grassy bank, I think he is the local pastor. Mum and Mme Maja pass by the large bolder outside the hut, under which the first child is buried. As soon as they are inside Mum starts to cry and wail. She has held herself together up to this point but now she let’s all the torment come out. I try to walk away but there is nowhere to walk to and both I and the cowboy man stare at the distant mountains. The powerful smell that has accompanied Sello’s disintegrating body over the last couple of months is everywhere, despite his absence. It was at the hospital, in the car and now even outside in the fresh air. There is no escape for any of us. 

 

Eventually mum spends her immediate anguish and comes out of the hut with Mme Maja. The next problem presents itself. The small hut is no longer the main homestead, the small breeze block building next door is, but the key has been lost during the flight to hospital last week. Mum finds a knife and the cowboy unscrews the door handle to no effect. I persuade him to use the knife to prise open the top window. I am the only one small enough to get through it and cowboy man holds the window open while mum give me a bunk up. 

 

Fortunately, I land on a plastic chair the other side. Now I am standing inside the locked room looking at the three others on the outside. “God will help” cowboy man assures me. God duly sends help in the form of Mme Maja carrying my tool bag from the car. It is passed through the window, and I extract a flat headed screwdriver, chip away at the mortar and prise the metal door frame wide enough so that the locked bolt has enough room to slide through. The door opens. There are three surprised faces the other side and I can’t resist a little “Da Da” at them causing a ripple of laughter. 

 

Mum thanks me for everything I have done, and I really don’t know what I have done. I have spent more time with Sello on home visits than any other child in Lesotho, but maybe all my efforts just caused Sello to suffer longer. What killed him in the end was the years of confinement in the hut and the resulting bed sores as mum hid him from the witches and tried to protect the family from the stigma of a child with cerebral palsy. Mme Maja tells me that at cerebral palsy clinic the previous week they had taken all the mums in the clinic into Sellos room to see what happens when you hide a child away and leave them in bed, not changing their position. Everyone was in shock and in tears as they see the terrible testament in front of them. Perhaps this is Sello’s ultimate legacy, and he will save other children from his fate in the future. I pray to God that I will never have to witness such torment again.