Rowan’s Down Syndrome Awareness Center in Hoima, Mid-Western Uganda, came about when my son Rowan was diagnosed with Down Syndrome just after he was born in March 2018.
I started talking with them and their care takers. I was amazed to find that so many of them didn’t even know what Down Syndrome is. They had found different ways of coping.
I started to do research on Down Syndrome, and immediately began to discover many kids and adults around me that had Down Syndrome, something that I had never realized before.
The kind of reasons were “He had malaria or measles just after he was born…” or “she was bewitched”. They thought it must be a curse or that they must have done something wrong while they were pregnant. Others in the community thought these people were mad and gave them nicknames like….. ZONTO, WIRE, SORT (meaning a problem with “wiring” of the brain, or “short” circuit).
So I decided to try to bring people with Down Syndrome together for mutual support and therapy and to find ways for creating awareness in the communities around that Rowan and people with Down Syndrome are not “Zonto”, that they can have full lives just like any other person