Down Syndrome Tanzania (Pearl), formerly known as Pearl of People with Down Syndrome Foundation (PPDSF) is a representative organization of Down Syndrome persons in Tanzania Mainland and member of Tanzania Disabled People’s Organization. ( Shivyawata ) , Africa Down Syndrome Network (ADSN) and Down Syndrome International.
How the Organization began?
On 1st October 1994, a child was born in Dar es Salaam Tanzania, being a third of three daughters. The mother, like many others in the developing countries, did not know, neither had she heard anything known as Down syndrome. Seven months on, she noticed that the child’s development was not what she expected to be. The mother went to Muhimbili hospital in Dar, ‘Makuti’. While there, a doctor, whom she already knew from school days, passed by and said, ‘’Can’t you see that your child has Down Syndrome?” At that time there was no way I could search online for the meaning of ‘Down Syndrome’ neither was there any information or counselling. As the case is in most African countries, the community thought it is curse or a punishment from God or gods and there- fore I am being punished. Now I realize it is not about curse nor punishment. It happens to all, regardless of economic, social class, race or religion.
Though it is most common among those who are aged 35 and above, but there are many cases where young mothers as young as 22 have Down Syndrome children. That child is non-other than Penny Aika, who went to a family-owned inclusive private school and finished Class seven in 2008 without knowing how to read and write. She could only read few numbers and letters. Why a Foundation? In most of the developing countries there is no Early Intervention, no Statement of Disability, not even Educational progress after the child finishes Primary School. This what prompted Penny’s family and some few other parents to come up with the idea of starting a Foundation which will address those issues in Tanzania Mainland. The Foundation then was known as Penny Aika Down Syndrome Foundation, registered in 2011 as a not-for-profit Company. In Feb 2017 it was registered as a NGO, namely Pearl of People with Down Syndrome Foundation. In May 2026, new name Down Syndrome Tanzania (Pearl), has been registered to operate in all regions in Tanzania Mainland, and it is a member of
Tanzania Federation of Disabled People’s Organizations (SHIVYAWATA), Africa Down Syndrome Network (ADSN) and Down Syndrome International (DSi) Of the few Founder Members of PPDSF (one has Down Syndrome), We believe in working together with policy makers, well-wishers
and all like-minded people to make a difference not only of Down Syndrome people, but all other Learning Disabilities in Tanzania.
