Circular - June 2025: Continued work at Napak and updates on several patients Napak We still want to develop work at Napak. The fact that we haven't started to build yet doesn't mean there's nothing happening. Work continues with community outreaches and growing relationships with partners, with a number of children located and referred to Acheru for treatment, some brought back from community visits, others sent on public transport. Some are undergoing treatment, some have now been able to return home, and through it all we are learning more about the area and what we need to do there. In particular, we are looking at how we can address the very high incidence of Cerebral Palsy and how we might prevent so many of the cases which should have been avoidable. Although we haven't built anything there yet, the land we bought is being put to use with a hired tractor used to plough the ground and local people helping plant crops. Water Over the years we've seen increasing demands for water as Acheru grows, but there have been significant improvements to secure an adequate supply, particularly with the recent bore hole. But it's a long time since the first header tanks were installed for distribution of water pumped up from our underground storage tanks. Several of the old metal tanks have now been replaced with plastic, but some of the support structures were corroded or weren't strong enough for larger replacement tanks so work has been under way to replace them. It's all part of the ongoing maintenance of Acheru, we continue to be very conscious of how it 'presents' to patients and families. We want it to look like a proper professionally run unit, helping inspire confidence in those who bring children there. It's a reminder that as well as our 'front line' staff directly involved in treating children, there are other skills needed to keep it all functioning - cooks, cleaners, gardeners, security etc. We want them all to see the value of their efforts in the work done and the outcomes achieved. I am particularly pleased to see the improvements to their water supply as I think back to the situation at Mengo Hospital, where I went in 1984 to help Donald Brownlie with his water project there. It's such a fundamental need, and any shortage impacts heavily on the work. Lego The children at Acheru differ widely in ages and ability and it's demanding for the staff to maintain their education or stimulate them. Something which has always been useful is Lego and I was able to add a number of recently donated sets to one of the DHL boxes I send from time to time with medical needs which aren't available there. It's always popular with children of all ages, with some of the older children able to give instruction to the younger ones. Jovan Our community workers continue to find children with cleft lips and palates who haven't been brought forward for treatment due to a range of fears over costs or superstitions. It's hard enough for the child to be disfigured and have difficulty eating and drinking, but to also be thought of as cursed can stigmatise the whole family. And yet for Acheru, working with partners, treatment can be carried out quickly at no cost to the family. The following report is from Rose, our social worker: SEBUFU JOVAN is a 5 months old boy from MITIYANA district KABULA Village born with cleft lip and palate. There was no medical intervention before coming to ACHERU. Both parents are staying together and blessed with 2 children. Mother is a house wife and father rides a boda boda (motorcycle taxi). Mother narrates that "this was the shock of my life. I gave birth to my baby without any idea of him being with any defect. I was surprised when the nurse told me my baby is not well, he has an open lip. I did not know how bad it looked until I looked at him. I cried to death but I was assured that the problem he has can be fixed when still young. I was referred to a big hospital but we became scared of how much money it was going to cost us. I went back home to get ready for where we could go but in lots of tears. The first weeks I had to hide my son inside because I didn't want people to see him and talk bad words which were going to hurt me. I thank God for the person who told us about ACHERU. Because the baby was underweight, I had to first go through nutrition care which worked well. From day one I received the best care from people I met. My tears died because of the best counselling I was given. The amount of money we were scared of wasn't there because he was worked on for free with in a short period of time. We went back home with great news after surgery and rumours about my baby stopped. People had started saying I gave birth to a monster. My baby is feeding well now with no other complications. Thank you so much ACHERU. GOD BLESS YOU SO MUCH ACHERU". Crash I continue to be very concerned for the safety of our personnel on the roads, and we've just had another reminder of why we're right to be worried. It's not just the long journeys to the north that can be hazardous, recently Joyce was driving our pickup on a local trip when she was involved in an accident with a drunk driver who turned across in front of her. Thankfully there were no injuries, and the pickup is a very robust vehicle so suffered no structural damage - though still a lot of parts will be needed to repair it. The driver of the other car involved didn't wait for the police and ran away - I'm sure he will be popular at home as he had his family in the car with him. Robinah Namutebi Since writing the above, Joyce has informed me of the tragic death of her sister Robinah, in a Boda Boda (motorcycle taxi) accident. Robinah was a lay reader in the Church of Uganda and was on her way to Kiwoko Hospital to lead prayers at a meeting there. Another reminder of the fragility of life. Brandon The following community report illustrates the importance of follow up visits. TUMUHASISE BRANDON is 8 year boy with cerebral palsy. This young boy has been under the care of ACHERU for some years. He is under the care of grandmother after being abandoned by both parents. CBR Team has been doing home visits and providing some support where necessary. But during the past few months grandmother and other grandchildren had shifted from where they used to stay. The team didn't give up on searching for them until they were found in a very far place from where they used to stay. The young boy was found in a terrible state with huge open sores which required immediate intervention. He had been left at home with a very young boy to take care of them when the grandmother had gone to Rwanda for some issues being it's their home country. With the help of nutrition care, wound dressing and several treatments, Brandon has greatly changed. The severe wounds he had have healed, he has gained a very good weight compared to the way he was. The good news the grandmother is now back from Rwanda to take care of him. She was advised on how to take good care of him and not to wait for him to be in a very bad state to return to hospital. The recent visit which was made, he was found in good condition. All family members are happy. It's tough for the family caring for a child like Brandon, and I hope in future we can do much more to address the causes of CP, it will be so much more effective if we can prevent it rather than deal with long term treatment. Mubarak I've written about Mubarak a number of times since he was first brought to us, near to death, over five years ago. He was in a very bad way, a number of times we had to question whether he could survive, and even if he did we wondered what quality of life he could have with his extreme vulnerability to infection. What a difference now, going to school on his tricycle, making friends, playing an active role at Acheru with younger children, singing enthusiastically in the Acheru choir, and now with a degree of independence which enables him to spend time with his own family, something we never thought would be possible. He shows very clearly why we are so keen to continue the work of Acheru, maintaining the strong Christian ethos which not only enables someone like Mubarak to be treated, but helps him thrive. We're thankful too that Acheru's reputation is sufficiently widely known that the journalist who found Mubarak so close to death knew where to take him. Moses In the short time since he was brought from Napak, Moses has become part of the Acheru family - recognized not as someone who is 'different' and who should be rejected or avoided, but belonging there like any other child, and he has come to know a love and concern which takes no account of any disability. He has now completed his course of chemotherapy and has gone back home to northern Uganda for a few weeks before coming back for surgery. Acheru can give hope to these children, and continues to set an example which we pray will be followed by others who might previously not have seen the potential in a disabled child. Return to full Acheru website