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
