March is National Cerebral Palsy awareness month.
It is CP month and therefore Cerebral Palsy Africa wishes to publish weekly a story about one of the children supported by one of our partners. This time a short story from Hannah Awadzi of the Special Mothers Project in Ghana: www.specialmothers.org
Your daughter can be a Finger Model
Fredricka is a young Ghanaian Lady in her teens. She is the first of four siblings, her mother Mabel said her daughter had neonatal jaundice, together with other conditions which she thinks doctors did not efficiently explain. She lives with Cerebral Palsy. In the words of her mother, I do not know where I haven’t gone to seek solutions for my daughter’s problem. In addition to going for physiotherapy sessions at the hospital, I tried alternative medicine, her mother said. At a point, I was on the verge of giving up but for the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues in Ghana.
The Special Mothers Project raised funds and set me up as a micro entrepreneur, I started business by selling ladies wigs and then bags and shoes. Now I have a shop where I sell my items in addition to doing a lot of online sales. Fredricka’s condition does not allow me to work full time, but I am happy that with the support of the Special Mothers Project, I am earning an income to enable me also to contribute to home support. Doctors recently recommended that I fed Fredricka using the G-Tube. A tube inserted through the belly that enables direct feeding through the stomach. Fredricka was seriously underweight and looked far less than her age.
As Mabel was admiring her daughter, she shared a video of Fredricka to the Special Mothers Project to the administration of all. Many of the parents on the platform praised her for the very good work she has been doing on Fredricka. Some of the parents said, Fredricka has really sleek fingers and very beautiful hair too. Even though Fredricka needs massive support for her daily living, many on the Special Mothers Project WhatsApp platform believe that Fredricka can be a Finger Model. She can model different brand of rings, nail polish among other beauty items for some income. No child is useless as long as they have breath and it is important that people learn to include every child, especially children with disabilities. We must be conscious of their existence and deliberately include them.
Last week we published a short story about Jordan, one of the children also supported by one of our partners, Angels Centre in Uganda. https://angelscentre.org/index.html
Jordan is a 6-year-old boy from Uganda. Although he was diagnosed with Athetoid Cerebral Palsy, he still has a fair control of his head and neck. Jordan does not speak but is able to understand when people talk to him, as well as respond with facial expressions. For example, he smiles in return, or makes a sad face when uninterested in an activity that is being offered to him.
His mother is a strong-willed woman, who has been trained through a CBR programme and has learned how to provide basic therapy to her child. Thanks to this, Jordan is now able to creep on the floor, reach out for objects when playing, and sit with support. Finally, he demonstrates appropriate toileting behaviour with help from a locally-made toilet.
NDD Executive summary.
The first training for Africa Masters in Neurodevelopmental Disability was hosted by The Salvation Army Ghana and Togo Territory in partnership with the University of Education, Winneba, with support from Cerebral Palsy Africa. Participants are from Ghana, Uganda, Ethiopia, DR Congo and two additional facilitators from Netherlands, CPA-Africa.
The well-being of parents of children with cerebral palsy.
Managing Neurodevelopment Disabilities – The Parent centered Approach. Akosua (not the ream name) shared her experience of nurturing a child with cerebral palsy at a support group meeting.
Religion and disability.
Mrs. Hannah Awadzi is Executive Director of the Special Mothers Project in Ghana. Mrs Awadzi shares her stories on our website. To read her latest blog about Religion and disability click here: Religion and disability.
Request from the ACAT team.
The African Community on Assistive Technology (ACAT) wants to foster sharing of ideas, discussion, and the building of partnerships around Assistive Technology (AT). ACAT wants to connect, support, and inform AT users, practitioners, researchers, funders/donors, suppliers, manufacturers and supporters in the African region and further afield.
We are preparing the next quarterly newsletter to update and inform our members and networks about developments in the Assistive Technology sector in Africa. It is a newsletter and not a peer reviewed journal so we encourage examples of practice to be shared to stimulate ideas for others who may be struggling with similar issues. We can include information on training, conferences, research and projects past or planned. Case studies of impact of AT on participation of AT users as well as explanations of service models increasing access to AT. We estimate that within and outside our network the newsletters are reaching over 300 people. Please include one or two photos or illustrations and an abstract of maximum 200 words.
We look forward to hearing from you directly (firstname.lastname@example.org) to enhance our sharing and learning to strengthen our chances of increasing access to AT in Africa.
No Option but to Kill...
Comment CPA on this touching story:
The story is horrible and tragic, but sadly enough not exceptional: mercy killing is an issue that can’t be ignored.
The effects for children with (severe) NDD in CBR programs are often still too low with high costs.
There is a need to improve services for children with (severe) NDD, through better skills for CBR workers and a better, more functional approach.
CPA aims to facilitate such a better approach which at least stops useless and too often torturing (unnecessary passive stretching) therapy, with costly non-functional devices, useless medicines and fake prayers, Caused by both lack of knowledge but also sometimes a deliberate moneymaking attitude: taking advantage of desperate parents who only want the best for their child.
All such components frustrates and disappoints parents, caused by unrealistic (sometimes even deliberately false) expectations, and leads to more poverty, with despair leading to tragedies as described in this story from Ghana.
Fortunately more and more CBR programs start realizing results for children with (severe) NDD needs to be improved, for which they need to change their routine-approach. CPA aims, through training and practical tools, to contribute to a more functional approach, with realistic goal setting, operating within a CBR strategy and with a key role for parents (mothers) in improving quality of life and in creating support (day care) structures.
News from CPA-partner in Kenya, june 2021.
Dr. Rachel Lindoewood:
Great to access your website and see the transition from the scottish charity. We have just published our third paper updating the work in Kenya, the 2nd relating to the workshop in Nyahururu which Jean ran and I supported, and the third regarding the APT research study. I will email the links. We also are setting up a small Welsh Based Charity APT for Social Development to support ongoing work in Kenya so it would be good to keep our links going.
CPA-partner in Uganda nominated for the 2021 EU Human Rights Defender Award
The results of this study are the first of its kind to reveal the treu extent of the hidden humanitarian crisis of excessive mortality in the CP child population
The Time is Now
Made by Purple Field Productions in association with CPA, “The Time is Now” is a moving film that explores the benefits which can be derived from physiotherapy for children with cerebral palsy, and which opens our eyes to the desperate need for an increase in these services within Ghana.
LISILOJULIKANA – The unknown
From Kenya comes the latest drama produced by Purple Field Productions using local people and knowledge surrounding the difficult issue of the stigma attached to disability – in this case cerebral palsy.