Your Stories | Sifa

May 3, 2016   Opinion

The Laurita Spina Bifida Project | Source

We have been asking you to share your stories with us about living with spina bifida, raising a child with spina bifida, or working with people with spina bifida and/or hydrocephalus. We are honored and privileged to share the FIRST in our series of stories with you, from Tanzania:

by Sifa Sylvia, Administrative Officer
Association for Spina Bifida and Hydrocephalus Tanzania

Tanzania—I am Sifa Sylvia. I work for Association for Spina Bifida and Hydrocephalus Tanzania (@ASBAHT), as an administrative officer. ASBAHT is a parent support group with the aim to help children with spina bifida and hydrocephalus (SBH) and their families. ASBAHT was formed in 2001 with the help of International Federation for Spina Bifida and Hydrocephalus headquartered in Belgium. The association has over 400 members with 8 branches country wide, Dar es Salaam being the headquarters.

I keep the office in order; communicate with all branches and stakeholders; maintain the register, statistics, make lists and register new members; coordinate dispatches; SBH awareness; making ASBAHT more known to our society, seek updated information on disability, attend to visitors and parents coming to the office. Plus field visit two times a week at Muhimbili Orthopaedic Institute (MOI), where most of our children are treated.

I met with ASBAHT in 2013 during a seminar organized by MyRight Tanzania Program, back then I used to work for the Special Education Unit at University of Dar es salaam as a Human reader and volunteered on several occasions for Tanzania League for the Blind.

In early 2014, during ASBAHT General Assembly I was contacted to translate for a partner from RBU (Parent group from Sweden). It was the first time I truly came to know about SBH. Though I had friends with SBH, I never knew their condition. I used to think it was just a physical disability. What interested me even most during my encounter with ASBAHT was the knowledge of folic acid and early prevention...that time, I felt like my brain was opened. My perspective of thinking changed. I felt the urge to know more about SBH, because this problem is big in Tanzania and the society relates the condition to witchcraft, curse, a result of family planning pills, etc.

Two months later, Hakim Bayakub the chairperson of ASBAHT, contacted me to work with ASBAHT. It was the best day of my life, and up to today I have never regretted working for them. I love what I do and I am part of the ASBAHT family.

We as an association face some major challenges, especially in finances, because we depend and rely on one donor- International Federation for Spina Bifida and Hydrocephalus. Tanzania has very few hospitals that treat children with SBH because of lack of knowledge and economic hardship. Plus these hospitals are not sufficient enough to accommodate children with SBH (availability of SHUNTs, surgeons, medical tests and equipment). Community awareness about SBH is poor, and others feel ashamed and hide their children. Many send their children to witch doctors.

The other major challenge I have experienced working with ASBAHT is the fact that children with SBH are rejected in schools. Very few have been lucky to study. The children are the future; if we deny them education, what will the future be like?

I have much to share but for now I will end here. I thank God for Laurita (Tellado) for her kindness, care and love for people. It will be an honor for ASBAHT to partner with you or any other organization or individuals out there with the heart to help the forgotten children, youth, and adults living with SBH in Tanzania.