October 2022 report: World Cerebral Palsy Awareness Day, and a report from our social worker.
World Cerebral Palsy Awareness Day is on 6th October, and Acheru has been considering how best to mark the occasion. The Acheru staff have a lot of experience working with CP children and their families, and CP accounts for around 65% of Acheru's patients, but there are still too many people who are unaware of what can be done to help.
The Ugandan government organizes an event in a different district each year, but perhaps this is unlikely to reach many in Acheru's target groups especially in more remote communities, so I have agreed to Joyce's suggestion that an event be held at Acheru. The programme has been prepared by our physiotherapist Timothy (with perhaps more of a party atmosphere than the government event!) to raise awareness of CP and what we can do to help.
I hope to include a report on this in the next update and am encouraged by the efforts being made by the staff not just in treating CP but in advocacy, with the potential to significantly improve the quality of life for families who know more about the condition and seek help for their children.
ANYANGO KATE is a 16 year old with multiple problems. The CBR team identified the family during their visit in NAKASONGOLA. Kate comes from a family of 7 children, four of whom suffer from weak bones and have poor eyesight but have good understanding. Kate's situation is worse as she suffered head wounds when she was under a year old, and they have never healed. She is also malnourished. The father blamed the mother for the children's problems, and they were seriously neglected. Kate's mother says:
"I have experienced the worst feeling of sadness, stress, torture and stigmatization in my life. My dear husband was supportive when I gave birth to our first child with the deformity (Victor; died in 2013, was treated from ACHERU) When I had Kate he started to change. I became a housewife because of my children, all my social life stopped, I lost most of my friends, and I became a laughing stock around the community, my family was given different nicknames which are hurting 'FAMILY Y'ABALEMA, FAMILY WITH LAME CHILDREN' and many other things happened. When it came to my parental family, things became so difficult on my side in all ways because no one could take me in or be close to me with my children who are in such a condition and very needy. I do not know whether they thought that the disease is infectious and they could contract it or it was a curse I was going to spread it to them as well. It is so hurting but I have no control over it, they are my children and I love them.

Anyango Kate
"Kate should not have reached this state but she lacked proper medical intervention, the wound which started at 5 months as something minor persisted because they lacked proper treatment for it. I endured everything and started taking them to clinics with little help for wound dressing. Years went by, I got used to the situation and I thought there is no cure for the problems they have.
"Flavia 12 yrs and Antonio 10 yrs old followed Kate. They are blind but also have weak bones. They often get fractures. I started working for what they can feed on and keeping them safe not to fall and get fractured because they cannot see. Kate spent her days seated in a corner, she listens to what is happening around her though she can't actively participate in any activity. Her mental state is very clear because she understands everything very well starting from people around home and most of the neighbors who used to talk to her. Pus which does not stop cannot let her socialize and many people don't want to be near her."
Having very needy children at home became a burden to the father and he changed completely, he stopped giving them food and became violent to the mother, he used to get violent in the presence of the children. Kate told her mother to leave home and not to take them with her. They love their mother so much so they could not let her die from their father's violence.
Kate's situation worsened when the mother left, because the father was not taking good care of them with feeding, she became anaemic and severely malnourished, there was no proper care of the wound as the mother used to do, her young sister broke her leg during that very time but because the father was tired of them he didn't take the little girl for proper treatment which led to non-union of her leg. ACHERU passed by as they travelled from Gulu in March 2022 and found a very sad situation in the home. The three very needy children were living a miserable life, they had very sad stories about their family and the pain they were going through. "We could not let father kill mother because of us, I told mother to go and leave us behind rather than dying, because we love her," said Kate. She pleaded "please take us with you if you say that you're our friends, we are tired of staying here without our mother and father is not a good person to our mother and us" And she wanted to get healed, she always said "NJAGALA KUWONA" 'I WANT TO GET HEALED' in a very low sad tone and this was so touching to hear and observe.
Mother was called to see how the children can be helped in terms of treatment and care because they needed her the most. The Team was very glad that local leaders and family protection officers were involved to stop father's violence and let mother stay around her children for better care and support.
A lot of investigation and care is required to save Kate's life now. She is a happy girl with a lot of dreams she would wish to accomplish, she is a prayer warrior who loves God so much and this is shown in the way she puts God first in whatever she is saying, she loves singing so much and most of the time she listens to music in her lonely corner.
Report by Rose Nakabugo, Acheru social worker.

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