Blog 56: An Unforgettable Year

 Some of the mums with children with cerebral palsy who live in Leribe have gathered for a meeting and they invite to join them after it's finished. They have a small presentation for me and give me a traditional hat, printed cloth and a “magic” mug that revels a message of thanks once hot water is poured into it. Their gifts and their appreciation mean a lot when they have so little. The outreach in Leribe has been one of the highlights of my year, it’s the work I really wanted to do in Lesotho, reaching out to children with disabilities in the most rural areas and training and supporting their parents and care givers at home. 

 

In the last 5 months in the districts of Leribe and Buthe with Mme Maja I have visited over 90 families, assessed their children and carried out over 100 follow up visits. Alone these numbers are meaningless, they say nothing about what took place during these visits, what I’ve experienced and what these families endure. I have seen terrible neglect and starvation, pressure sores so deep I can see the underlying bone, body’s distorted into impossible angles by contractures and dislocated joints, families living in despair, poverty, and hardship. Parents trying to protect their children from their suffering by using charms to ward off curses and witchcraft, but helpless in the face of all the adversities that surround them. 

 

Despite all these horrors and the frustrations of dealing with a destitute health and social service, these memories are balanced by more positive experiences of my year in Lesotho. I can reflect on the hope and smiles of the children, the exceptional care and dedication of most parents and grandparents in depleted circumstances, their willingness to learn and do better for their children, their gratitude for advice and the assistive equipment which has been given out. When I look back, I remember children who have walked, children who have sat up, children who have been taken outside from the darkness and into the sunshine, children who have reached their next milestone and are living their best life within the limited resources that are available. 

 

With very little I feel we have been able to do a lot. Education, advice, and support can achieve wonderful things for a family living in isolation with a child with severe disabilities. Together with my co-workers I have learnt how to make cardboard furniture and supply children with supportive seating to sit up and join in family life, socialise, and improve postural control. Where I have found equipment, I have repaired it, and redistributed to children that it fits. With kind donations from the folks back home I have been able to buy 21 brand new wheelchairs which have given children greater mobility and independence. Most of these wheelchairs have gone to children accessing mainstream education in Maseru, but three went to children in Leribe who were living their lives indoors, because they were too big to be carried outside. With their new wheelchair their horizons have expanded, and quality of life greatly improved.

 

The new wheelchairs have released additional wheelchairs that could be repaired and be given to other children. A four-year-old with hydrocephalus, autism, and self-abuse, hitting himself over the head, was given one of these repaired wheelchairs. Looked after his grandparents he was unable to sit up without being held by them and had to constantly be restrained from hitting himself. Daily life was draining for everyone. He instantly loved the wheelchair that he was given. Now he can sit up all day, he is much calmer and a lose scarf tied at the elbow stops him harming himself when he feels the urge. Granny greets us with a smile, now she can move him around easily and get on with the household chores. It’s been life changing for her and the boy.

 

I could describe many such stories, the boy with a severe brain injury from a road traffic accident who had been left lying on a mattress for the last ten years because his parents have been unable to sit him up. After being given a cardboard chair, he can at last sit in the kitchen with his family and be part of their life; the orphaned boy with severe contractures, left in a cold, dark back room on a urine soaked mattress by his granny, brought into the sunny front room by rearranging the furniture and educating granny how she could meet his needs better; the boy who has been unable to walk for 6 years due to having no kneecap and bilateral talipes, who learnt to walk within a couple of weeks after being given a pair of crutches, For the first time in his life is able to go out and play with his mates, daily miracles that I have been privileged of being part of. 

 

The project goes from strength to strength. In Maseru we support over 40 children with disabilities at the local mainstream primary and secondary schools.  We have carried out regular exercise and sport sessions at the primary school to improve fitness and mobility. At the high school we have carried out ground improvements for children using wheelchairs accessing mainstream education. Hopefully by the end of the year we will complete a workshop for APT production, training, and the repair of wheelchairs. Fifteen of the new wheelchairs went to children at these two schools and we need to provide the best environment as we can for the wheelchairs to continue to serve the children as well as possible. 

 

With Malamuele Onward we have just instigated a carer 2 carer cerebral palsy clinic at Q2 hospital in Maseru which will provide invaluable support and education for families. Next year looks like it will be a very exciting time to build on all the opportunities that have arisen and so as 2022 draws to a close I wish to thank all the people who have supported the project and made so many things possible. 

 

Firstly, Glasswaters foundation Canada who paid my expenses to come out here, accommodation and milage costs for the project, 4 salaried workers, APT expenses, the building of the workshop, and a host of other expenses the project needs to sustain it. The project might be small, but Glasswaters funding have helped it have a big impact and enabled it to reach out to hundreds of children with disabilities and their families. 

 

I would like to thank my talented co-workers, who can just as readily make cement for ramps, as glue for APT chairs.  Without their help, guidance, and local knowledge, I would never have found the families, or been able to communicate with them. Working together the project has now been able to assess and follow up children in four districts in Lesotho, train care givers and provide the APT furniture that these children desperately need.

 

I would like to thank all the folks back home who have raised thousands of pounds through the Aberdyfi rock shop, or given generous donations which have been used to buy 21 new wheelchairs (actually 24 because I have ordered 3 more wheelchairs to be collected at the beginning of next year), a bunch of crutches, tools, medical supplies, and some expensive repairs to the car which has suffered mightily after a year of outreach work and off road terrain, with even the regular tarmac roads covered in lethal potholes. 

 

The amazing thing about all these donations is that I haven’t even asked, they’ve just been given, and whenever I’ve needed extra money to support the children it’s been there. I would also like to thank those friends who’ve been there for a friendly chat, message, or email in times of need and despair. Sometimes all you need is a kind word and some encouragement to gain a better perspective when it’s been a tough day. 

 

Soon I will be flying back to the UK for a few weeks and will return mid-January to continue onwards and hopefully upwards. It’s been an unforgettable year, but it’s only the tip of the iceberg of the work that needs doing here for children with disabilities. I count myself very lucky that I’ve been able to make a positive contribution and for all the support given by you kind folks. Many thanks for everything, much love Jan 

 

 

Blog 55: A small victory ?

 It's Monday morning and we are visiting the boy with the terrible pressure sores who has returned from hospital (blog 54). I have brought him blankets, clothes and bandages using money I have been given in donations. The mother proudly displays her handiwork in dressing his wounds. She has used sticky plaster to hold the bandages together but unfortunately has also stuck it down to his bare fragile skin. It takes twenty minutes of the boy screaming for us to remove the plasters so we can examine the wounds. They look about the same as they did a week ago when we took him to hospital, but he seems better in himself now he is on a course of antibiotics. 

 

We dress the wounds, position him as best we can, and leave for our next visit. A few days later we return and examine the wounds again, they are very deep, some of them down to the bone, and they are not drying out. We decide not to dress the wounds and leave them exposed, covering him with a sheet to keep the flies off. The boy is emaciated, and I find out that the family only has sorghum to eat, so it’s little wonder his body doesn’t have the resources for him to heal. It doesn’t help that the water source is miles away, so supplies for cooking and washing are limited. We go up the road to the nearest small shop and I get some UHT milk, Weetabix and some tins of corn beef and peas for him. At least he now has some protein, which is soft and easy for him to eat and may help his body to start to heal. 

 

Before we leave Mme Maja tells mum to remove the traditional medicine charms from around the boys neck, which are cutting into his skin. I would never dare to ask such a thing, but Mme Maja has had enough of the whole witchcraft thing and is giving mum short shrift. Mum looks scared and says that the boy’s aunty gave them to him, a traditional medicine woman. In the end it appears Mme Maja is even scarier than aunty and mum removes the charms reluctantly. 

 

On Saturday I go to Phelisanong children’s centre to take a boy I know there a wheelchair. We go back to my first visit to Lesotho to work with children with disabilities in 2016 (Blog 8 No Happy Endings). He has been through a lot and risen above it all to go to mainstream schooling. He still lives at Phelisanong and has messaged me several times to ask when I will visit. Finally, the time came a few weeks ago and I found that he has turned from the small 8-year-old boy I first met into a fine young man. His voice has broken, and he is now at secondary school. 

 

His smile and enthusiasm still define him despite the huge broken wheelchair he is tying to get about in. I immediately put him on the list of children that I am buying new wheelchairs for in South Africa the following week. Now he climbs into it and its fits him well, he is comfortable and better than that for a young man, it goes fast and gives him new independence. He no longer has to rely on others all the time to push him and he is made up. He spins on the spot, zooms up and down the path before disappearing to do a lap of the centre. I drive back home with a small glow inside me as I nostalgically flick back through the years and everything that has happened since I first met him six years ago.   

 

Now its Monday morning again and we are back bringing more supplies to the boy with pressure sores, huge cabbages, more tins of corn beef, milk, soap, nappies. Mum tells Mme Maja she spoken to the village counsellor and hopes to get some food supplies from the ministry of social development. She then drops the bomb shell. She has also spoken to aunty and told her she has removed the boy’s charms. Aunty has said she wants to see us (yikes I will be right behind Mme Maja on that occasion) but also that she is going to buy the family cement so they can finish the building that they are working on and bring the boy out of the hut to give him more room. 

 

I am astounded. Cement and more living space are definitely of more practical help for the boy then a bunch of charms. I wonder is this represents a small victory over the witches. (See blog 42 Battle with the witches) I’ll definitely take it but we still have to meet aunty and I’m sure she’ll have something to say on the matter.  

Blog 54: Hospital horrors.

I leave Maseru on Saturday after a frantic week trying to pull together project logistics up here, from banking, to outreach visits, schools, and assistive devices. I check the ramp building at the school and then the APT chairs that I am supposed to be taking back to Leribe. Something is wrong with them, they are not the quality I hoped for and I can’t take them back. I think about the problem during the journey home, there is a new man helping with the chairs and I must ensure he is learning the correct processes. I call the APT trainer I know in Hlotse and arrange for him to return with me on Wednesday the following week. 

 

Monday I am back on outreach visits with Mme Maja and we are on our last outreach visit of the morning. A family with two children both with cerebral palsy (CP), the parents convinced they have been cursed by witchcraft. Their son is 15 years old and severely disabled with spastic CP, uncontrolled epilepsy and kept hidden away in the hut. The first time I saw him I noted in his history that he also had dislocated hips and bedsores on the hips, about 3-4 cm. circumference. I got the OT to come out and see him on the second visit and prescribe him medication for the epilepsy and reinforce my message about positioning to avoid pressure on the ulcers. 

 

This is now the third visit, and I am careful to avoid the rounded boulder by the front door which I stood on last time to take a telephone call. After the visit Mme Maja informed me that the first-born child was buried under it. I was mortified, but she told me not to worry as she had made the same mistake and sat on it the first time she visited. It was an easy mistake to make as you would never guess someone would bury their child literally on their doorstep. 

 

Mum greets us tells us that the boy’s epilepsy is now under control, but she is worried about the bed sores. I peel back the blanket to reveal bed sores on the hips about 10 cm circumference, bleeding with dark edges, smaller ulcers breaking out on the insides on inside of the knees and ankles, his feet and penis swollen. I am shocked by his deterioration and after calling the OT we agree I need to get him admitted into Motebang hospital, get the wounds properly dressed and treatment for the infection which appears to be assailing his body. 

 

His sister is taken to a neighbour and both parents come with us back up the hill, dad carrying the boy in his arms. Even though the boy is wasted it is still hard work carrying 30 kgs in your arms. I’m glad I don’t have to do it, plus I must admit to concerns about the open wounds and possible HIV contamination, despite being on my second pair of medical gloves and lathering myself with sanitizer. 

 

We arrive at Motebang hospital, and I tell the parents to wait in the car while we try and find someone to help us. We have arrived just after 2pm but when we get to casualty, we find the nurses still eating lunch. They look annoyed at being disturbed, tell us there’s no doctors and direct us to another part of the building. We go down a long dirty corridor full of the walking wounded with bandages wrapped around different parts of the body. It looks like some of them have been waiting days to be seen and my heart sinks. 

 

The next room we are directed to has more annoyed staff in it eating lunch who direct us elsewhere, and so the pattern continues for another two more rooms until we are back where we started in casualty. Staff now begrudging say we can wait in the adjoining room to see a doctor. Mme Maja goes back to the car to tell the parents to bring their son in. Time ticks slowly and I try and zone out because we might be here for hours. A lady eventually comes in a blue coat, and I ask her if she is the doctor, and she says yes. I try to tell her about the boy’s medical history. 

 

She approaches the boy, then retreats deciding to put some gloves on. She approaches again and gingerly peels part of the nappy away to reveal a hideous ulcer. She rapidly retreats again and asks how old he is. “15 years old” I reply. She lights up. “He is not our responsibility. You must go to paediatrics.” Once again, we find ourselves in the corridor with the walking wounded and then in a small room rammed with patients, waiting for the door of the consulting door to open. Being British I don’t like jumping the queue, but Mme Maja encourages me to do so and virtually pushes me through the door. Next moment I find myself in the room trying to explain the boys’ story again. 

 

The young doctor asks for his Bukana and satisfied says “This is an epilepsy clinic, and his epilepsy is now under control so he is not our patient” I start to plead with him “Casualty said you would help. Every person we have seen has turned him away.” He is very sick.” The doctor smiles and tries to calm me. 

“I am going to help and will admit him for his wounds. I’m just not going to treat him. Now is there anything else we should know about him? How did he get these sores?”

“He has cerebral palsy, he is immobile, lies indoors all day on a mattress, has swallowing difficulties, and consequently is poorly nourished.” 

“I see” says the epilepsy doctor, “That’s not right, is it?” 

He points to the boy’s flexed elbows and wrists, typical of someone with spastic CP. I inwardly groan. Epilepsy is a condition commonly associated with CP, yet the doctor seems to know nothing about it. 

“He has spastic cerebral palsy” I repeat. 

 

We leave the parents to sort out the admission and say we will return the following day after visits, which we do. Both parents go back home overnight but mum returns at 7 am. She reports that the boy has a drip in is arm, his arm is swollen, he hasn’t been cleaned, or his wounds dressed because there is no water at the hospital. We go into the room where the boy is lying on a filthy blood-stained sheet due to seepage from his wounds. A huge pressure sore has opened on his elbow, and I can see down through several layers of tissue to the bone. 

 

His body is general swollen. The drip, which is just glucose and electrolytes has run out. His epilepsy medicine hasn’t been given to him, or any antibiotics. There is an untouched tray of food left by the side of his bed which a posse of flies buzz happily around. The meal consists of several slices of bread, a lump of something brown, which might have been chicken in a former life and two cups of drink which look like pond water. Clearly the message that he has swallowing difficulties hasn’t got through, or that he is immobile and can’t just reach out and grab a slice of bread. 

 

I feel a range of emotions which I can’t really describe but know that it won’t help to lose my cool. I step out into the corridor and see a man in some sort of blue uniform. “Are you a doctor?” He denies it but is clearly sort of hospital worker. I direct him into the room. “Look!” I point out the filthy sheet, the bleeding wounds, the fly blown food and the empty drip. 

“There is no water” he says defiantly. 

“Do you have another bag for the drip?” I ask. 

He reluctantly goes to a cupboard and gets another bag of fluid. “Here, you change it” he thrusts it at me. “No, you change it”, I eye ball him. He sighs and does so and then to avoid answering my question, of whether he is responsible for looking after the boy, he decides to produce a clean sheet and nappy.

 

As he is now on a roll I ask for gauze and bandages, and he goes back to the cupboard and brings them. I dress all the wounds as best I can, and we change the nappy and sheets. Every time we move the boy he screams and cries, the wounds smell, and it feels like we are in some horror movie. At last it’s done, mum has brought some in some runny porridge and is able to give him a little food and drink. We leave and I give mum her taxi fares for the next 6 days. They are a very poor family and if she doesn’t come in and feed him no one will. I must go to Maseru the following day to set up a training course and I won’t be back until the weekend. I send a series of messages to the OT, imploring him to check on the boy and add my prayers. 

 

We drive away. “Don’t ever let your son be admitted to this hospital, or any government hospital” I tell Mme Maja.  

Then as an afterthought “and if anything, ever happens to me get someone to drive my car and take me straight over the border to South Africa. I wonder if I have made a mistake getting the boy admitted, so far its worse than him being at home. More messages to the OT follow over the new few days and the news improves. Finally, the boy is getting medication and the wound are being cleaned and dressed. Someone is even feeding him. 

 

On Wednesday I return to Maseru with the APT trainer Mahlomola. By lunchtime we are at the workshop. After a brief introduction I leave them to it as I have meetings with principles at the primary and secondary schools. Its hard going crossing the school grounds as I am buzzed by the kids showing me various bits of broken wheelchair. The principals are totally on board with the work we are doing but there are other pressures all around and I must try to resolve these issues. 

 

I return to the workshop to find that APT boards that the trainer has examined are faulty and the four chairs for Leribe will have to be scrapped. I am so glad I brought him up to sort out the processes and make sure everyone is clear about each stage. If made properly these chairs are incredibly strong, but if the processes are faulty they will fail.  

 

On Thursday I work with Ntate Ntsukunyane to do physio at the school with the kids and get three old wheelchairs to work a bit longer by the tech teacher welding them back together again. At the end of the afternoon a deluge pours out of the sky and we are all marooned at the school for over an hour. Eventually we escape and can get back home. 

 

Friday, I dash into town to get supplies needed by the project. I return to meet up with the high school principal and go with her to talk to the priest about the workshop we are hoping to have built at the school. The priest has the lurgy and coughs all over us and I must hope my immune system will cope. I think he is supportive of the project but you never can tell. I send papers to the lawyer to draw up a sublease agreement, before I am dragged away from other administration by a visitation with a boy in a wheelchair pushed by his mates. He only has two wheels on his wagon, can I fix it? 

 

We tried welding it the previous day but its broken again. I tell him to return in the morning and we will go to Saint Angela and get an old chair off them. Next day we go up to Saint Angela, get a wheelchair that I replaced the previous week with a new one. It has four wheels, so it’s a good start and I use half a roll of gaffer tape to stick the back on. The boy is happy, does some tricks and leaves. I measure up another couple of kids for the wheelchairs for my next visit to South Africa. Sister then appears and I take the opportunity to ask her for the Bukana of a boy I am concerned has muscular dystrophy. My worst fears are confirmed as I read the results of a specialist appointment he has had. 

 

The boy is only twelve and already in a wheelchair. This is the second boy I have come across at Saint Angela with this devastating progressive condition. I explain the prognosis to Sister, and she says she will inform the staff. She tells me she is leaving at the end of the year and someone else will be taking over. I don’t know if this will be the dawning of a new era, but we will see what the new year brings. 

 

I go over to Abia high school to check on the APT training course. I have to crawl under the fence because the gate is locked. The course has been a huge success all round and I’m happy that the processes and knowledge behind them have been learnt. Big smiles, a photo opportunity, a beer and we are done. Mahlomola and I jump in the car and drive through the rains back to Leribe. Mme Maja messages me that the boy with pressure sores was discharged home this afternoon. We will go and see him on Monday on our visits and so another week will begin all over again, hopefully with less drama and a bit more relaxed, but you never can tell …

 

 

 

 

 

 

 

 

 

 

 

Blog 53: Roller coaster

“Well, you have to go in, the boy must be there, I can’t see how he can have been moved to anywhere else” I say to Ntate Machesa and Mme Maseretse. The boy has cerebral palsy, severe spasticity and is as rigid as a stick, impossible to bend in the middle by even the slightest degree. He is eleven years old and lives with his grandmother, after both his parents died. On my first visit he was lying on a urine-soaked mattress in the cold back room, pelvis rotated, both hips and his knee dislocated, dirty and malnourished. 

I’ve returned today with Mme Maja and the other two helpers to see if things have improved. The morning started badly with news of the death of a child we only visited a few weeks back, cause of death unknown. There is nothing we can do but put the sadness aside and continue with the day. On the first two follow up visits of the morning both mums have taken on board the advice given on our previous visit and with their daughters both doing better. I’m hoping that we are on a roll and this third visit will be just as successful but since we have been knocking on the door for the last ten minutes and peering through the windows without any response, this hope is fading. 

 

Ntate pushes the door a little more forcefully and it slides opens with some effort. For one moment I think that maybe grandma has collapsed behind the door, but it turns out it’s just a breeze block and Ntate is finally able to enter the house with Mme. Thirty seconds later they come out and announce that there is no one inside but the back door has a shovel against it, so how is it possible someone could have left both doors wedged closed, unless they climbed out of a window?  Since all the windows are locked the mystery deepens and I circle the house again, looking for clues. Suddenly a young man pops his head out the back window. 

 

“Who are you?” I look at him suspiciously, he looks stoned, and I call the others for a translation. It turns out he is grandma’s son; she has gone to a funeral, and he was in a room at the back which the others didn’t look in when they entered the house. The boy is in this room as well, at least this time the room is warmer, and he is lying on a mattress with a plastic cover. The son is working in South Africa and can’t give and detailed history on the boy, the last entry in the boys Bukana (medical book) is 2016. We need to work with grandma to try and educate how she can improve her grandson’s life, but grandma doesn’t have a phone and we can’t get hold of her. Mme Maja must try and call a neighbour to communicate with grandma through a third party. 

 

Sometimes the series of obstacles that must be overcome even access a child, let alone help them, can be very challenging. I cast my mind back to Monday, when I walk through the door to find a girl with her hands bound together. I soon understand why as she bears the scars on her head from continually hitting herself, together with bite marks on the back of her hands. She is taking medication for bipolar and schizophrenia, but apart from helping her to sleep at night this medication is giving no respite from the self-harm during the day. I don’t know how to assist her but then I remember a soft helmet to protect the head that I brought in some years back stored up in Maseru. 

 

For now, it’s the most practical thing I can come up with and on Thursday I retrieve the helmet from Maseru. I discover its far too small but hopefully with some Velcro and craftwork I can make it fit. The day is frenetic with visits to both school Principals and trying to adjust a bunch of wheelchairs. Suddenly in the chaos of the school yard, surrounded by primary school kids all fascinated by me using a spanner, I realise if I don’t hurry, I’m going to miss the 4pm deadline for signing the book of condolences at the British High Commission (BHC). Ntseliseng and Ntsukunyane turn up in the nick of time to help me and I quickly exit the school to beat my way down through the rush hour traffic. I arrive at the BHC with ten minutes to spare and persuade the security guard to let me enter. 

 

The BHC have been very helpful both to me and the project and having received an email from them that a book of condolences was open should I wish to sign, I decide it might be prudent move to continue to build positive relationships with them. I missed the outgoing BHC’s leaving event and maybe this visit will present an opportunity to meet the new BHC. Adrenalin fuelled I zip through the inner security gates and screech to a halt in the hallway where a picture of the Queen and Duke of Edinburgh look down on the open book of condolences. 

 

The new BHC, Harry, is standing right by looking suitably solemn. I didn’t expect him to be there, and a slightly stilted conversation follows as I find out he is from the Congo with two small children and likes hiking. He finds out that I also like hiking, know lots of great places in Lesotho to hike and that I’m a physiotherapist and make cardboard furniture for children with disabilities. He looks slightly alarmed by this introduction and I decide to move swiftly on to signing the book of condolences. 

 

I open my notebook to the two short paragraphs which have taken hours to craft to try and avoid any offence to anyone connected with the project. Royalty and its associations can be a very sensitive subject. As I start to copy the piece, I realise it’s going to be hard to fit it in the allocated box. I make my writing smaller, but realise that not going to work, so I start to cut out parts. Harry notices I’m struggling and suggests I move onto the next box. I resist, but he insists, and I end up putting the cut sentences back in at the end of the piece in the overspill box. 

 

I’m not sure it makes any sense at all but hopefully my writing will be too small for anyone to read. After this rather embarrassing struggle with the book of condolence I say I must leave and dash out the door to try and get back to Hlotse before dark. I just make it and am glad to wake in the morning to glad to find its Friday. We are taking out some equipment to children which hopefully will bring about a positive change to their lives. 

 

The first visit is to a boy whose wheelchair was far too small and I am replacing it using money raised by the folks back home. The deal was that he would get a new wheelchair if grandpa built a ramp to improve access to the house replacing the two broken steps, which were dangerous both for the boy and his grandma to use. Grandpa kept his side of the bargain, and the boy is now able to sit comfortably in his new wheelchair and exit the house in style pushed by his grandma. On a flat piece of concrete at the back of the house the boy soon learns to self-propel in a circle and even forward and backwards, no mean feat as he can only use one hand. His face breaks into a huge smile. It’s a great result for his independence and a great result all around for the family. 

 

On our second visit we are taking out an APT chair for a boy who was involved in a road traffic accident when he was five and suffered a serious head and brain injury. He has been unable to talk, move or sit up since. For the last ten years he has spent most of the time lying on a mattress in the back room. We put the chair in the kitchen and with some padding the boy can sit up in it and Mme Maja gives him some water to drink. Finally, the boy can be part of the family again and be fed his meals at a table with some dignity. Its massive change for the better for his quality of life and I think his parents feel quite emotional to see him sitting there. 

 

We move on to the neighbour’s house, where an eighteen-year-old boy with cerebral palsy lives. His mum has just seen the APT chair we’ve given out and thinks her son would benefit from one too. I was concerned by the lack of space in the small shack and thinking a folding wheelchair might work better, but she feels the chair would work best for him. I go with it and measure him up. The boys quite funny and we enjoy a bit of banter in the process and some laughter. As usual this week’s been a roller coaster and at times exhausting with its ups and downs. It’s good to end Friday on a positive note but I know the peaks and troughs will just keep coming, it’s all part of the journey. Its best to hang on tightly and enjoy the ride when you can. 

Blog 52: All change

We have been driving down a corrugated dirt track for a couple of kilometres before we park and start to walk up a slope between some trees. The family we are going to see have apparently run away from the witches of Thaba Tseka and are hiding in the hills. They have done a good job finding this secluded spot, but we finally locate them in a small group of mud huts with the carcass of a cow lying outside. They are planning to eat the meat, but I’m not sure if that’s a good idea as it looks like it’s been lying in the sun for days and is more like biltong than meat. 

 

The five-year-old boy is quite disabled but at least well-nourished and with no contractures. I am relieved, I have seen some heart-breaking cases of neglect and severe malnutrition during my visits in Leribe over the last 6 weeks. I have now visited dozens of families, guided by Mme Maja, I don’t know what I would have done without her help. The families are widely dispersed, and she is a genius at getting them to trek into central locations to meet us so we can be more efficient with travelling time. Having a child with cerebral palsy herself and from a humble background she has a grass roots connection with these families and an empathetic understanding that I can never replicate. 

 

From September Mme Maja will be joining the physiotherapy and outreach team as the care facilitator for the Leribe district. She will continue to run a weekly carer to carer clinic from Motebang hospital for mothers with children with cerebral palsy (CP) and hydrocephalus, following them up with community visits. As CP is a lifelong condition this provides vital support for families, training them to provide the best quality care possible for their children and help them to avoid secondary complications as they grow older. Not only are there more children in Lesotho with CP, than in a higher income country, but they tend to be at the severe end of the disability spectrum and are therefore more at greater risk of contractures, dislocated hips, pressure sores and scoliosis. With few health care resources to help them their families need to have the knowledge to provide what home care they can for their children for the rest of their lives.

 

Mme Maja is one of the kindest people I have ever met, totally reliable, getting up at 5am every morning so she can wash and feed her son before we hit the road first thing. Her quiet guidance has got me through some dark hours and accepting sometimes there is nothing you can do except share a parent’s grief. A couple of weeks back we were huddled on the floor of a house around a paraffin heater trying to console the mother of a six-year-old, ravished by TB, emaciated, with only one lung functioning trying to sustain him with tiny gasps of breath, I doubt if he even weighed 8 kg. He was hanging onto life by a thread and sadly there was nothing we could do but share the mother’s sorrow, a week later he passed. 

 

It is not always like this and there are many children who somehow beat the odds and many inspiring parents, grandparents and guardians who provide the best they can in the poorest of circumstances. I am uplifted by their dedication and the opportunity to help them with advice, treatment and equipment that really does make a difference to these children’s lives. Last week I was back in South Africa buying wheelchairs and crutches with donations from the folks back home. With covid restrictions now lifted in South Africa we crossed the border in record time. Coming back through customs was still problematic, but fortunately I had Ntate Ntsukunyane, the OT, with me who can smooth things over with the customs people who are always looking to make life awkward and get a bribe. 

 

Ntate Ntsukunyane will now be joining the team in Maseru for two days a week to provide his professional expertise as Thato, the POP team leader, now leaves for a year’s study in Ireland to do her MSc. We will miss her advocacy for children with disabilities, project skills and connections. Thato has always been much better than me at the administration and presenting ideas in a way that is more likely to get them accepted. Recently she finely honed a bid for a grant from the British High Commission (BHC) for an initiative to improve the supply of assistive devices in Lesotho. This application is to set up a workshop and skills base for APT furniture at Abia high school. This is the high school where the children from Saint Angela go and where we have built a relationship with the principal and staff to support children with disabilities. 

 

Hopefully building a workshop at Abia will prove a sustainable project by training the teachers and students to do APT, as well as providing the children with skills that they can use when they leave school. While it seems like the BHC is keen to support this initiative nothing is straight forward, as all small grants are presently on hold until the UK’s prime minister’s replacement has been elected. Fortunately, Glasswaters Foundation has stepped into the breech, and it looks like whatever happens this project will go ahead, and this year will see the building of an APT centre at Abia high school and the training of teachers and students with disabilities to produce bespoke cardboard furniture for children who need supportive seating. 

 

Trying to support this development, while also moving to Holste in Leribe at the end of June life, means that life has been frenetic for me. I have now visited over 60 families in the district on the outreach program and assessed their children. On top of that I have had to return to Maseru 3 times for administrative matters, a two-day training program, visits to the schools and an equipment run to South Africa. I think things will now get easier as I have broken the back of the work in Leribe and from September I will be making follow up visits, which are always a bit easier than first assessments. 

 

I am very happy with the way work has gone in Leribe. With Mme Maja’s help we have got into a good routine of visits and covered a lot of ground. Overall, the families I have visited in Leribe have been poorer than in Maseru, the children younger and the terrain more remote. As you can imagine working in the community in Lesotho is very different to my former job working in the community in Powys teaching health board and has taken some adjustment for me to learn what realistically can be offered to families and children that will benefit them. 

 

I have made some useful local contacts and been able to draw on their skills to help families. The Motebang hospital OT is a prescriber for mental health and has been able to assist with some of the deficiencies of epilepsy medication here. Last week he joined us on a visit to a family we saw back in July, a very poor family with a son and daughter both with CP, whose parents are convinced they have been cursed by witches. 

 

Their older son has severe contractures and spends his life hidden in the hut lying on a mattress. When I examined him on the previous visit, his hips were dislocated, he had open pressure sores on his buttocks and uncontrolled epilepsy, as like many children here once they get too big to take to clinic the medication stops. When we approach the hut, we all stand in amazement. Sitting outside is the daughter in a brand-new wheelchair, not only that but it’s a good quality one and fits her! Such a thing I have never seen before. 

 

When the parents explain how this miracle came about it turns out that somehow, they have made a connection with the first Lady’s office, and it is her office that is responsible for donating the wheelchair. As national elections approach in Lesotho I cynically assume it is a gift designed to show the benevolence of the government to its people. After admiring the wheelchair and the daughter’s efforts to self-propel it, we examine the son. Thankfully his pressure sores have improved since I last saw him, and the OT is able to reinforce the education I gave to the parents and give a prescription to the mother for the boy’s epilepsy. She can now take the prescription to clinic without having to take the boy and obtain the medication he vitally needs.

 

The visit has been a success, hopefully the prescription will improve things for the whole family as they all sleep in the single room hut and boy normally has several large seizures every night which should now be controlled. As I gaze up from the mud huts to the distant Maloti mountains the vista is how I always imagined the outreach program would look. The condition of the children and what I had to offer them with few available resources was more of an unknown quantity. After nine months experience out here, I feel in a much better position to contribute advice and action that will bring about positive outcomes for children with disabilities and their families and change their lives for the better. We say goodbye and walk back up the hill to move on to the next visit, the next challenge…

 

 

 

 

Blog 51: Leribe Outreach

Mme Maja goes on ahead to the home while I dash back down to the car having forgot an assessment sheet. Its Monday and we are on our second visit of the day and the first day of outreach visits since I arrived in district of Leribe. The few days I have been here have been a whirlwind so far, making new contacts, trying to sort accommodation, and now visiting a whole new group of families and children. I’m excited, there seems to be so much potential here for improving the lives of children with cerebral palsy. 

 

The first visit of the day has gone well. A boy with a cheeky smile and good prospective for improving his milestones and independence. We leave the house ladened down with two large bags of dried beans the mother has farmed. Now, having picked up my assessment sheets back at the car, I jump across some bog and briskly walk back down the track, enthusiastic to meet the next child. I am soon at the small homestead Mme Maja has pointed out to me. I can see it’s a very poor compound with a few single room huts, and a rickety cage of sticks housing a few chickens. I go through the open door of the hut where I can see Mme Maja sitting and cheerfully greet the old lady and man inside. The old lady, who I presume is the grandma, sits on the bed despondently while grandfather pokes the fire. 

 

Mme Maja clears her throat, “So I have learnt just learnt the sad news that the boy has passed on Friday.” There is a pause, the grandma starts to sob, and I spontaneously cross the room to hug her. I can’t pass on my condolences in her language and its all I have to offer her. It’s only a brief moment and then I sit down on a bench, looking at the earthen floor while Mme Maja talks more to the grandma. 

 

The mother passed away 10 years ago when the boy was about six and since then the grandma has been the main carer for the boy. He was severely disabled with spastic cerebral palsy. He grew out of wheelchair he had years ago, and since then has mostly been lying on the bed, unable to sit up as his contractures grew worse over the years. He suffered a lot from vomiting and from what Mme Maja translates of the grandma’s story it sounds like his death was due to asphyxiation, the grandmother only realising something was wrong because she noticed his twisted limbs had finally relaxed into a more normal position.

 

Time passes in slow motion, and I continue starring at the earthen floor trying to imagine the boy and grandma’s life over the years, but its impossible. Eventually Mme Maja suggests we leave, and we take the boys old wheelchair with us. It sounds a little heartless, but its pragmatic way things work here, there are so many children with disabilities and so few wheelchairs. The boy’s father also lives in the compound and brings the old wheelchair down to the car for us. It’s a Shonaquip wheelchair, specialist designed and built to last. South African charities sometimes supply them for the children in Lesotho when they are young, but once they grow out of them it seems difficult for older children to obtain a larger size.  

 

I start the car and we carry on to the next visit subdued. Its only ten minutes down the road to the next child who is three years old, has no assistive equipment and spends her day on the floor, or on the bed in the small tin hut we are in. By the end of the visit, it has struck me she looks the perfect size for the wheelchair we now have in the back of the car. We go with the parents to look and sure enough it fits the girl beautifully, it’s in great condition and doesn’t even need to be repaired. 

 

I take a picture of the proud family and her in the wheelchair. It will change all of their lives for the better, but the moment is bittersweet. We drive on and I take Mme Maja back to her home to assess her son, who I have only met briefly. He is totally dependent, severely disabled and keeps vomiting. Despite all this he has a happy disposition. 

 

While I try to take a history, he starts coughing and a huge amount of viscous phlegm ejects from his nose and mouth. I wonder that maybe as he is so sedentary his lungs are full of secretions and decide to try some respiratory physio to see if I can loosen them. There is just enough room to get him on the floor in the small room and do some vibs and clapping over the chest wall. Nothing happens for a bit, then suddenly he starts being sick and I find myself kneeling in a huge pool of undigested porridge. 

 

He had breakfast over four hours ago and from the evidence I am now kneeling in it appears that because he is so immobile, he has a problem digesting his food. He is also constipated so I guess it reaches a point where if it can’t get out one end it comes out the other. All I can suggest is they feed him smaller meals to give his digestion a chance to work, and we try and build him an APT chair as soon as possible. He has an old one which is at the grandmothers and too small for him and his present slumped position on the settee surrounded by cushions, is certainly not aiding his digestion.  

 

I finally arrive back at the guest house which I am temporarily staying at while I find somewhere to rent. It takes me ages to do my notes as I can’t focus and when I finish, I wash and clean up the dried beans I was given in the morning, which have a selection of grit, straw and vegetation in them. By the time I’ve done that they still need well over an hour to cook so I give up and open a tin. Beans on toast, so quick and easy, you can beat it wherever you are in the world. 

 

Tuesday dawns sunny and bright as usual. The first boy we see is called Ben and has a hemiplegia. He is 10 years old and very interested in the toys I have. It’s such a relief to engage with him as many of the children I see have profound intellectual disabilities and are difficult to interact with. Play is always the easiest way to do physiotherapy, but the children need to be interested in the toys first.  

 

Soon we are having a ball, Ben kneels against a chair, using the seat as a table, where I place the toys which he plays with while strengthening his core muscles. As I dig into my bag of tricks I come across a mouth organ, which I have never used and had completely forgotten about. Ben already has a shaker on the seat in front of him and I wonder if he can use the shaker while I play a tune on the mouth organ. 

 

He does and gets it straight away, he’s in time and humming along to a tune he’s never heard before, I’m just making it up as I go along. It’s a magical moment of musical connection and he even anticipates the ending with a theatrical outstretched arm and shake of the shaker. Brilliant! I am absolutely made up by his performance. 

 

We go outside to see him in his wheelchair. Two things are immediately apparent, his wheelchair is too small for him and the access in and out of the house is a three-step nightmare. Like many children with disabilities in Lesotho he lives with the grandparents while the parents’ work. Granny is struggling to walk, let alone get a 10-year-old in a heavy wheelchair up and down the steps. I ask whether the grandpa can get some cement and turn the steps into a ramp. 

 

Grandpa is called and it takes him about 30 seconds to agree he can make an improvement on the current situation. You would think it would be obvious but sometimes these things must be pointed out. Reluctantly I leave Ben’s house, I could have played with him for hours. The rewarding time I shared with him sustains me through the next two difficult visits. A four-year-old and a one-year-old, both blind, both with microcephaly and severe intellectual disabilities. 

 

The four-year-old is obese and already 25 kg and a struggle to lift. He’s diet sounds okay, but he is obviously eating far too much. I point out to mum that at this rate they soon they won’t be able to lift him, and without a hoist it’s going to be a problem for everyone. I suggest she cuts down his portion sizes and leave her with the goal that he doesn’t put on any more weight in the next couple of months and starts to become a more normal circumference. 

 

The little one year old girl in contrast is tiny, has swallowing difficulties and becomes very distressed whenever mum tries to feed her. Swallowing difficulties have featured prominently in the children I have worked with over the years in Lesotho, and I have longed for a speech therapist to advise at times like these. There isn’t one so I must use what knowledge I have combined with a little common sense. 

 

I put myself in the one-year-olds place. If I was blind, had little understanding of the world and swallowing difficulties, being fed spoonsful of food must be a terrifying experience. I suggest to the mum she choose a time when her daughter is relaxed, and not too tired and see if she can give her some tasters of food on her fingers, before even trying to feed her. Then try tiny amounts, make sure she is positioned well, the mouth is clear before she tries another spoonful, and make sure she has plenty of time and patience. Mum nods, she’s a busy policewoman, but at least she has a carer to help. 

 

More visits follow on Wednesday, we spend a fair amount of it lost, as there is sporadic network and lots of missed calls from the mother trying to direct us. At one stage I think we might end up in South Africa, but we finally see the mother waving by the side of the track to direct us to the house. During our meanderings in the day, we pass close to Mme Maja’s mother in-law and pick up the old APT chair that her son has grown out. We also pick up his old wheelchair and take it back to Mme Maja house when we finish our visits. With a little adjustment it still works for him and certainly puts him in a better posture than slumped on the settee. It’s a happy ending to the day and I arrive back at the guest house to find the lovely lady in the kitchen has been boiling my beans for hours, so at last they are finally ready to eat!

 

Thursday is clinic day. Mme Maja facilitates a clinic at the local hospital for mothers and children with CP. Mme Maja’s son was born with CP and back then she had no knowledge of his condition or how to treat him. When he was six, she met organisers of Malamuele Onward, a South African organisation, based in Johannesburg, committed to improving the lives of children with disabilities in rural communities. Mme Maja went on a residential course to Johannesburg with her son to learn about CP and how she could best assist him as he grows up. Now she works as a volunteer facilitating the weekly clinic at the hospital, training, and transferring the skills she has learn from Malamuele to other mothers. 

 

There are seven workshops in the Malamuele carer-to-carer program she runs once a week on Thursday. The seven-week cycle began last week with workshop 1, What is CP? Today is workshop 2, CP as a way of life, explaining to mothers how CP is a lifelong condition and commitment. Children with CP can change in a positive or negative way over time, depending on how they spend their day and mums learn about how to help their children in a positive way. It’s a brilliant initiative, passing on knowledge and skills to these mothers when there is so little help available to them. From what I gather there are four district hospitals running this program in Lesotho, but not in Maseru district where I have just come from. 

 

At today’s clinic there are over a dozen mums and their children sitting on the floor of the physiotherapy outpatient room at the hospital. Most of the children are quite young, with at least four babies present, but surprisingly it’s not too chaotic. Once the learning session is over a practical session using massage begins, while I start to assess individuals. While the workshop provides a good foundation of knowledge for the mums, I can provide a more specialised assessment of their child’s individual needs. 

 

I commence with a one-year-old who I notice mum struggling to feed at the back of the room. Her Bukana (medical book) is already thick with notes. Doctors think she has dwarfism, brittle bones and CP. She has a fractured arm, burns to the stomach (when mum accidently split boiling liquid) and is undernourished. She is very fragile and it’s difficult to know where to begin with her multiple problems. Her muscle tone is stiff, she can’t sit and has poor head control. I decide to start with some basic positioning and feeding advice, nutrition is a fundamental need, but at times like these I wish I could call on a multidisciplinary team like I had access to back in the UK.   

 

By the time I’ve finished my assessment the next three babies have fallen asleep and everyone else has gone home, except a 7-month-old baby who arrived late. Mum brought her on the advice of a doctor who was concerned that she had delayed milestones and might have CP. From looking at her she might be a bit behind but there are no signs of CP. I show mum some simple activities she can do with her daughter to help her achieve her next milestones. Given time and encouragement I’m sure this little girl will do well.

 

I’m already tired by the day’s events but we go out to visit two more small children, both with hydrocephalus, living in the same single room house. The mums and their children are all lying on a couple of mattresses on the floor when we arrive. Both children have enormous heads, despite having shunts. I think this is because children must go to South Africa for this operation, so it always takes more time than is ideal. The two-year-old is unable to support the weight and size of her head and cries a lot when we try and support her with rolled up towels in a sitting position. We need to let her rest and lie her down on her side. Eventually she will get stronger with short amounts of activity every day, but it’s going to take time.

 

The three-year-old has some head control and can sit up with support. He’s a bright little button and chatters away. He only has use of his left hand, so I give him a shaker and we play a little music together, which is fun and makes him smile. Unfortunately, his right leg has been very painful for the last few days and he won’t let me touch it. I fear he has dislocated his hip and I tell mum she must take him for a scan tomorrow to investigate the cause of his pain. Throughout the visit both mums are joking and upbeat, and I leave wondering how they remain so cheerful in the dire circumstances they are living. 

 

On Friday we see three older children out in the community. Visits to older children can be very difficult as unless they have been well looked after over the years, with good positioning and stretches they can develop severe contractures, as in all the cases this morning. The other problem with older children is they get heavier and difficult to lift.  As there are no hoists to assist parents, older children and adults can often spend the rest of their lives indoors if they have no wheelchair.

 

The first teenager has spastic CP and spends his life in a tin hut, either on the sofa or mattress on the floor. I think with careful padding he could possibly fit into a standard wheelchair, if I can get hold of one, then at least he could access the outdoor area. The second boy had a road traffic accident when he was six resulting in a severe head injury. He subsequently had seizures and has never walked or talked since. His tone has increased over the years, and he has developed contractures. 

 

We arrive to find smoke coming out the door of the hut as the family have lit a fire inside and there is no chimney. The winter mornings are very cold here and the family appear to have decided smoke inhalation is preferable to freezing. Eventually mum and a sibling carry the 15-year-old outside and put him on the ground with some rolled up blankets. The boy stares vacantly, his eyes flitting with nystagmus, his arms and knees flexed with increased tone, one of the ankles deformed and dislocated.

 

If there is even a small glimmer of hope to improve his life we must try. He is lifted into a plastic garden chair so I can take measurements for an APT reclining chair which I send the back to Maseru for Thato and Ntseliseng to translate into a cardboard chair. Hopefully this will improve his sitting posture, stop further contractures, reduce future complications and maybe even allow him to be brought out into the sunshine. 

 

The final visit of the day is a 21-year-old lady with spastic CP and intellectual difficulties. She lies on the settee flapping her hands infront of  her face and making chirping noises. When I remove the blanket, her pelvis is rotated and her legs “windswept”. This means the whole spine is starting to rotate, personnel care becomes challenging, digestion difficult and sitting up almost impossible. After trying for 20 minutes with blankets and pillows we slightly improve her position on the settee. I doubt if we can reverse what’s happened, but maybe if they position her more carefully it will stop things getting worse in the future. 

 

By the time I finish my notes and do some follow up messages it’s been a long day at the end of a long week. Seeing new patients every day and doing assessments all the time is demanding. Fortunately, there are bright moments to lighten the load, Mme Maja has been a great help, we’ve had some laughs, and it will get easier once I start to do the follow up visits. Leribe district is proving testing, there are a lot more babies and infants to see here than in Maseru. It’s not my area of expertise, but the younger the child the more potential there is to have a positive impact on their development and give parents the right information from the start. I’m learning fast and I am up for the challenge.   

 

 

Blog 50: Halfway

I have now been in Lesotho six months since my arrival on December 3^rd, 2021, and I am halfway through the year I said I would spend in Lesotho working with children with disabilities. Somehow this has also corresponded with blog 50, which seems like an auspicious coincidence. As I face my first winter in Lesotho, I have been reflecting on what has been achieved so far and how best to spend the next six months.

 

This visit has been different to my other visits in many ways. Firstly, the length of time. Previously the longest I have spent here is three months, sandwiched between working for the NHS, with barely time to pause before turning around and going home again. More time certainly gives you a better chance to develop projects, relationships and make project work more sustainable. 

 

Having funding and a collaboration with the Canadian Foundation, Glasswaters, has also helped support the project and help it grow. Glasswaters have supported my expenses here, as well as administration and equipment costs for the project and paid for workers on the ground. 

I have trained Thato and Ntseliseng on previous visits and online, enabling me to keep in touch with while at home and now work with them in Lesotho. This has allowed the work to be more sustainable and continuous, rather than trying to pick up the pieces of where I left off like on previous visits.   

 

The focus of the work has also been different. Previously I have worked at two children’s centres where I set up physiotherapy rooms, trained staff, brought in equipment from the UK and was able to see large numbers of children every day and progress exercise programs and not have to travel anywhere. Now the work is focused on the physiotherapy and outreach program, (POP), training families, lots of travelling and making and buying assistive devices locally. Educating and empowering families has meant the work has proved more sustainable than previously, but I do less hands-on physiotherapy and the work comes with its own challenges.  

 

Most of the outreach work has been working with families belonging to the Mo-Rate Cerebral Palsy group. An organisation of mothers with children with cerebral palsy with over 150 families registered and spread throughout Lesotho. Throughout December I reviewed the Mo-Rate children that the team had already assessed and was working with in the Maseru district. I did online training with the team through covid lockdown in 2020, using the Multi-Agency International Training and Support (MAITS) program. They used this program to provide families with education and advice on how to best support their children and improve their health and independence. Many of these children were at the higher spectrum of disability, living at home with parents and carers who often had little idea on how to handle their children or care for their needs. Sometimes parents believed they had been cursed and had hidden their children away.   

What I found when reviewing this work was that the team had provided invaluable support and advice to carers in terms of basic nutrition, feeding positions, postural support, hygiene, stretches and suggestions for cognitive stimulation using information provided by the MAITS program. As always when working with families some parents had responded more positively than others, but for the most part the team’s advice and suggestions had empowered the parents to make a positive impact on the health and quality of life of the children. I was impressed with the work Thato and Ntseliseng had done, the relationships they had established with the families and the progress the children had made. 

 

For the last six months I have been based on the outskirts of the capital Maseru, living with my co-worker’s mother-in-law, just a few minutes down the road from Saint Angela children’s centre, and the local and the local primary and secondary schools which they attend. This has proved convenient, but intense at times. Poor relations with the management at Saint Angela and child protection issues have meant it has been no longer practical to use the physiotherapy room I set up at Saint Angela in 2016 or run physiotherapy sessions there. The lack of physiotherapy has been to the detriment of the children’s health and well-being. 

 

The problems of using Saint Angela as a base have been overcome by seeing the children at the local primary and secondary schools and seeing their families through the outreach program. We have assessed the children at school and run general physiotherapy sessions and floor football to raise the children’s levels of fitness for those that attend the primary school. We have also given out two assistive paper technology chairs to students with cerebral palsy to support their seating during school time and help them focus on their studies, along with two new wheelchairs and upcycled another wheelchair. 

 

After giving out a new wheelchair to Marsela last week, to her great joy her and her teachers, I took back her old wheelchair which belongs Saint Angela. I knocked on Sister’s door, greeted her, and explained that I have given Marsela a new wheelchair and I am returning the old one. Sister looked up from her desk,

“I need a wheelchair too” she says petulantly. There is a pause and a clatter as my jaw drops on the floor. Recovering I say

“Oh why?” 

“I am disabled now, and I need one to get around”. She says it without grace and I absorb this statement along with my memories of her on my last couple of courtesy calls here when she was murdering, plucking, and boiling some of the hundreds of wretched chickens that reside at Saint Angela, and my conversation with one of the boys that live at the centre who she boxed around the ears so viciously when he missed church, that his head was ringing for weeks. 

“This is all I have” I say pushing Marsela’s tiny, battered wheelchair towards Sisters substantial girth. 

 

I leave, I will never understand that woman’s bitterness and cruelty. Fortunately, the local school principals have proved much kinder and easier to work with. As well as the regular sessions at the primary school, I visit the high school regularly and have given out wheelchairs and crutches to children who attend there and live at Saint Angela. The high school has assisted with the recycling of wheelchairs and are interested in building an Appropriate Paper Technology (APT) workshop/physio room/clinic to be run by the teachers and pupils. With all the children with disabilities that attend the high school it would be a very sustainable project but would need to find a substantial amount of funding. Another project for the future … 

 

Before I came to Lesotho, I had knowledge of APT projects in low-income countries providing specialised furniture for children with disabilities using recycled carboard, but I had no practical experience of how to make it. After watching some online videos and buying a book I had some weeks of experiential learning with Thato, and we produced our first prototype chair in January. 

 

We have now produced a dozen chairs which has made a real difference to the ability of children to sit up, use their hands, improve their posture, core strength, and socialise. We have found the chairs particularly useful for those children with children with cerebral palsy who have the type with uncontrolled movements, dyskinesia. Bespoke chairs enable the children to “fix” themselves and help reduce their uncontrolled movements. We introduced two chairs into school to help a couple of girls with this condition which has benefitted their schoolwork and concentration.   

 

The achievement of producing this furniture has been even more remarkable since we have not had a proper workshop space to produce it in. Fortunately, we have been able to use the garage and a couple of rooms in a building of the guest house where I have been staying. Several incidents of low back pain were necessary to realise we would benefit from buying a table so we could stand up and work and measure and cut out the pieces needed to make the chairs. We have also invested in some tools and equipment that which have improved our work and efficiency. These factors, together with experience and the accumulation of our skills have improved the final product and enhanced the accessories we are able offer clients.

 

Acquiring the skills to make APT furniture and seeing the effect of it on children’s lives has been one of the highlights of this first six months. At home I order equipment through reps who demonstrate and adjust assistive technology according to the needs of the client. Making the furniture myself has made me more acutely aware of how I need to adapt the furniture to the client’s needs without the ease of the press of a button. Getting it right and seeing how it benefits the children has been of great personnel satisfaction.

 

Providing wheelchairs for children I have known for years and finally seeing them in something that fits, is comfortable and increases their independence has been another highlight of these last six months. Thanks to the generosity of donations and fund raising at home I have been able to go to South Africa and buy six new wheelchairs for children and upcycle another three. Knowing the positive impact on their physical health, mobility and well-being has been very gratifying, especially as all but one of these children are from Saint Angela and I regularly see the improvement it has made on their daily lives as they use the wheelchairs to go to and from school. 

 

In addition to the APT and wheelchair projects, working with the schools and Mo-Rate CP children I have added my professional expertise to the project and taken the opportunity to advocate for children with disabilities both at grassroots level and national level through stakeholder meetings. I am proud of what the project has achieved so far. It’s a relatively low budget project with a big impact, touching the lives of dozens of families and children and making a real difference to the quality of their lives and the physical and social environments in which they live. 

 

I now feel I have reached a point where I feel I have achieved the major objectives I set out to do in the Maseru district, and although there is still plenty of work here, I feel the team here can continue to develop it without me, and my skills would now be better used in a new district. I am hoping to finish outstanding pieces of work in Maseru over next few weeks before moving to a new district by the end of June. 

 

The last six months have been a rollercoaster of emotions, highs and lows, despair and joy, frustration and satisfaction. Getting a car at the end of January not only helped the project logistics but has also enabled me to get out in the mountains and access the great natural beauty of this country and restore dwindling energy supplies when it’s all got too much. It has not been all sunshine and unicorns but that was never going to be the case. The most important thing is that the project has made a real improvement to children with disabilities in Lesotho and their families and hopefully the next six months will bring me further opportunities to enhance the work that POP is doing out here. 

 

Thanks to everyone back home that have supported me and thanks to everyone that has backed the project in so many ways, I could not have done it without you.