Blog: November 2019

My journey into advocacy for children with special needs can at best be described as serendipitous. This is more so because prior to the life-changing encounter I will proceed to recount very soon, I knew nothing about Down syndrome or any kind of rare condition, special needs or inclusion, I mean I knew absolutely nothing. But I took a bold step and trusted God to make the path clearer. I can say with great confidence that He is doing just that.

So the story starts a few years ago when I had witnessed the bullying of a very young boy who was supposed to be in school, like other children of his age, but serving as an apprentice in a cobbler's shop.
There was something different about him. He had a flattened face, especially the bridge of the nose, an almond-shaped eye that slant up and a short neck.
I had tried to stop the bullying with very little success. And so with a well-channelled irritation stemming from the fact that I could not help him despite my efforts to, and a determination to do something about it, I carried out some extensive desk research to ascertain why the boy looked so different. In many countries in Africa, children with special needs are hidden or killed. There are very little resources or education around special needs kids.

My findings did not only open me to several other kinds of rare conditions and their causes, but it also revealed that the young boy had Down syndrome. That experience and the desire to help people like him going forward gave birth to The Nechamah Foundation; a not-for-profit organisation, set up to advocate for the inclusion of children with special needs especially down syndrome while influencing the society towards their protection.

This journey has given my life a whole new perspective, a passion which I find very fulfilling.
A little over two months into the fellowship program as an Urban Promise International Fellow, and a master’s degree student (M.A, Organizational Leadership at the Eastern University), I now wish that I had somehow learnt previously what I am learning now. If I had, perhaps the journey would have been a little smoother. But thanks to those experiences, and the numerous problems I and my team have had to solve with little or no resources, they make me appreciate the journey even better because I am able to relate with class activities and teachings on a very great level and especially during discussions in school.
I have learnt and still learning that mistakes are not to be avoided. However, learning quickly from the mistake(s) and how we bounce back from them, is what propels the universal trajectory of growth and development. Each day, I am reminded that several lives are dependent on my being resilient and several others draw inspiration from what I do and in who I am.
Those thoughts invigorate me.

It is easy to say: “that’s not my child”, “that’s not my community”, “not my problem”, “not my world”. But the issues surrounding children with special needs, speaks to problems that must be jointly solved; responsibilities that must be considered critically and shared. In all of our campaigns and advocacy, there are those who see the need and respond accordingly by supporting the cause in kind, providing resources to enable us reach more people; I consider them heroes of humanity. My drive has always been to see that children with special needs especially ones who are economically disadvantaged are able to live up to their full potentials.

I want to be remembered as that individual, who from a deep sense of conviction, thrived in a path that is least trodden, was a voice to the most vulnerable and marginalized; children and teenagers with special needs such as Down syndrome, who helped them become their highest self and to live a life that is full, significant, happy and interesting.