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Patient Voices: Saving Brains


Saving Brains

These stories were created in the April 2014 Saving Brains workshop in Handeni, Tanzania. Malaria exacts a heavy toll from millions of families across the world. This project, in conjunction with the World Health Organization and funded by Grand Challenges Canada, has allowed one group of families in rural Tanzania to express how it has affected their lives. Handeni is one of the poorest districts in Tanzania. There is little infrastructure and mechanisation is minimal. The majority of the population live a very hand-to-mouth existence, living in mud huts and subsisting by growing maize, beans and, perhaps, a few vegetables. Malaria is very common. Babies and young children are particularly susceptible to the worst effects of malaria. When it rains, the mud huts collapse… And the mosquitos emerge.
Read more at: Daily Life and Challenges Faced By Households With Permanent Childhood Developmental Disability in Rural Tanzania – A Qualitative Study

The future is a long walk
Ally finds it difficult to scrape a living for his eight children, especially since one of them is disabled and take most of Ally’s time. This child had malaria as a baby. Despite spending a great deal of money on a variety of treatments over many years, he still has one hand that is useless. Ally dreams of his son attending a special school but it seems like an impossible dream.

Help me help myself
Amina carries the responsibility for her entire family on her shoulders. She sells fried fish to bring in a bit of money but life is a struggle, especially since her daughter is unable to help, having suffered brain damage as a result of contracting malaria as a child.

A chance for school
Having lost three children Fatuma is no stranger to tragedy. When her 18-month-old daughter started having convulsions, neither a blood transfusion nor traditional herbs could prevent paralysis of one arm and one leg. Without physiotherapy, even ten years later, the girl is only able to move around on her knees. In order to care for her daughter and tend her farm, Fatuma has had to move far from her village – and there is certainly no money for a special school.

Life is hard
Habiba’s 12 year old son cannot walk or talk. He is doubly incontinent. He has fits and moans a lot. He needs full-time care. There is no time for family activities, no time to work. There is no bed and so they cannot use mosquito nets. How is Habiba to endure her almost unendurable situation?

A hope for help
With 11 children, including two sets of twins, life was already challenging for Rehema. But when her young daughter began having convulsions, her life became even more difficult. Ten years on, the child still has fits, is doubly incontinent and is completely dependent on Rehema for every aspect of her care, leaving her with little time to work on her farm and barely enough money to survive.

A change of name
Zubeda’s husband left her after their 18 month old daughter contracted malaria. Since then, she has looked after her five children on her own.  The convulsions continued even after treatment in hospital and, eventually, Zubeda consulted a traditional healer who advised changing her daughter’s name in the hope of deterring evil spirits. She is 12 now. As she has some understanding of what is going on around her, she would really benefit from attending a special school but the cost is prohibitive for Zubeda.

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