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Circular - September 2019: Latest updates on the progress of a few patients
Some Acheru work is relatively straightforward, some can be more challenging.
I mentioned in an earlier update that the staff had been reduced in northern Uganda, with just two now based at Minakulu. This was done to save money, but also to avoid duplicating other services which are available there, and we can now see that this hasn't affected the number of children being referred for treatment. An Acheru team also still visits the north to conduct rural outreaches, most recently to Acimi Primary School where 55 patients were seen, and Otwal, where 63 were seen, with cerebral, orthopaedic, plastic, and medical conditions.
Patients from the north have included:
Okello Kenneth
Kenneth suffered from osteomyelitis, a problem we encounter all too often at Acheru, with children suffering terribly if their condition has been neglected or wrongly treated. In many cases it may be years before they are brought for treatment, their problems usually starting with a relatively minor injury which goes untreated. Kenneth is a ten year old boy, the fourth born in a family of six children from Baridwang village in Oyam district. He was brought to our Minakulu unit with exposed bone on his right arm, suffering pain and an inability to use his arm, with smelly continuous pus discharges.

Kenneth before treatment
His problems began in 2010 with swelling of his arm and pus discharge. This was first treated periodically at a health centre, but with no improvement, and the bone then became exposed. Often in the early stages of osteomyelitis, broken skin may be treated with dressings and can heal over for a time, leaving the infection to develop deep under the surface. He was diagnosed with chronic osteomyelitis of the right forearm and brought from Minakulu to Acheru. He was referred to CoRSU for biopsy and sequestrectomy then taken back to Acheru for nursing care and rehabilitation.

Kenneth after treatment
He has now healed well and returned home. His parents feared he would lose his arm, and are now relieved and thankful. He will remain on our follow up programme to ensure there are no further problems.
Akao Gift Immaculate
Gift is three years old, from Wigwen village in Minakulu sub county. She is the second of two children, staying with her maternal grandmother since her parents separated. Her deformed feet are associated with the 'spirit world' and she was given the name 'Ajok' to reflect this. However, her mother rejected this and gave her the name 'Gift' meaning her child was a gift from Almighty God, not from the spirit world.

Akao Gift before treatment
Her family was given hope when she was brought to our Minakulu unit. They were shown the stories and pictures of other children who had been treated for the same condition, and agreed that the child should be treated. She was diagnosed with club feet - Bilateral Congenital Talipes Equinovarus. Intervention was by serial manipulation and casting, therapeutic exercises, and psychosocial support. The intervention was successful, she can now walk normally and play with other children. It's a clear response to those who said she was cursed.

Akao Gift after treatment
Atim Lydia
Lydia is another of the many children whose quality of life has been significantly improved through Acheru treatment. She is the second born of four children and since her parents separated has lived with her mother and grandmother. Thankfully they were supportive of her and did what they could to help her.
Lydia is 11 years old, from Barobiya village in Oyam district. From the age of four she developed inward curving of both knees. At first this wasn't painful but as she grew walking became more uncomfortable and it was painful for her to go to school. Her parents brought her to their local health centre, who sent her to a regional hospital. Then, on 2nd Feb this year, having met a parent whose child had been treated at Acheru, Lydia was brought to our Minakulu unit. From there she was sent to our main Acheru unit. She was diagnosed with a condition known as Bilateral Genu Valgum, a deformity that displaces a limb, and referred to CoRSU.

Lydia before treatment
Surgery was carried out to both knees, then back at Acheru she had nursing care, physiotherapy, and psychosocial support. She is no longer in pain, both legs are now straight, and she is very thankful to Acheru and everyone involved in her treatment. She can now go to school, play with her friends, and perform daily chores without difficulty.

Lydia after treatment
These children are typical of many who pass through Acheru, some take much longer. A recent admission is proving difficult. I can't show you a picture or use his real name as he was brought to us in unusual circumstances, and we don't yet know if we have his parents' approval for his treatment.
He is an 11 year old boy who suffered a spinal injury when he fell from a tree and is now paraplegic. I don't know how long ago this happened, but we believe that his parents were simply leaving him to die. Somehow, he was discovered by a journalist who arranged a private ambulance to bring him to Acheru, by which time he was very ill, requiring oxygen and with very serious pressure sores.
Acheru can't kidnap children or take them without parental consent but this boy's condition was desperate so he was accepted by Acheru and taken to CoRSU. Our surgical patients usually spend a few days there before returning to Acheru, but this boy spent 108 days there having his injuries treated and receiving skin grafts for his pressure sores. He is now back at Acheru. Each child there has a carer, usually a relative, but as this boy's family seemed to wish him dead, Acheru has hired a carer for him.
Consideration was given to informing the police of what had happened but having his father arrested would have made a bad situation worse and could benefit no one. We don't know what difficulties and pressures his family faced but we've often seen disabled children rejected - a belief that they are cursed, pressure from witch doctors or tribal elders, or a simple inability to cope. But we've also seen previously abandoned children welcomed back by their families. Acheru's efforts are directed at convincing everyone that the child has value and isn't cursed, and this usually results in a change of attitude with the child being accepted and seen in a new light.
This boy, despite his situation, is in good spirits. He will have a lot to deal with but it will be so much better if Acheru can work with the family and help them to care for him. We have already seen many former patients helped through our Community Based Rehabilitation programme, not just to make the best recovery possible but often to get back into education, go on to do well, and have future prospects which might have previously seemed unrealistic or impossible.
The most urgent problems have now been dealt with and I'm now waiting to hear what progress can be made with his family. We've seen again and again how the work of Acheru, against a background of very negative attitudes to disability, can influence patients, families, and whole communities.
Brian Dorman

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