Ephrance’s journey in defying the odds against Spina Bifida and Hydrocephalus

At only two days old, I had to begin my first life through the walls of the surgical theatre because of Spina Bifida and Hydrocephalus.

I was just a fragile little baby girl whose parents had no idea of how life will turn out especially since there was less knowledge was available by that time about the condition.

There were a lot of misconceptions concerning my growth. Some doctors had already predicted my fate that due to my disability level.

The conclusion was that I, Ephrance Nadongo, will never see the joy of walking or even worse survive beyond five years on earth.

As much as this was demoralising to hear, my parents never gave up on giving me the life I deserve.

They started taking me for occupational therapy and physiotherapy in hope that maybe one day I will sit, crawl or even walk like any other child.

Surprisingly, after three years of consistent rehabilitation, I started crawling using my bum and out of the blues, I stood up and started walking. It was a wonderful miracle to so many including doctors who never thought it was possible.

Even though I was not walking like other children, my parents were contented that at least, I could walk in which ever way possible. This was the start of my journey to a very sucessful life living with Spina Bifida and Hydrocephalus.

After so much background noise and tears surrounding my survival, I am now a teacher and a disability and human rights advocate.

I am currently a teacher for children living Spina Bifida/Hydrocephalus at a certain school in Kampala, Uganda and it is the best experience ever because it has changed the mindset of a alot of children.

Growing up, in an environment where people living with disabilities are cursed, I decided to use my voice to change people’s mindsets, showing them that having a disability is not the end of the world and a disability is just an impairment that no one prays for.

Being a member of the Spina Bifida and Hydrocephalus Awareness Network (SHAU), people with disabilities in Uganda have been trained on life skills so they can live an independent life.

In the past, people could not disclose their disability because of the stigma it comes with it but through capability building programs, many have started appreciating themselves for what they are.

SHAU is spareheaded by the youths like me and we have recorded awarness songs with an aim of educating the world about Spina and Bifida and Hydrocephalus through music.

We have also gone and met with members of the Ugandan parliament to elaborate about our needs as people living with Spina Bifida and Hydrocephalus. Some initiatives have already been implemented such as providing surgeries for free at certain government hospitals.

I have steadily seen many misconceptions change through advocacy. No one deserves to start life in walls of a surgical theatre. We shall keep up the gospel about living with Spina Bifida and Hydrocephalus untill it is history to tell.

Spina Bifida and Hydrocephalus Hydrocephalus is not a one-size-fits-all condition. Do not let anyone, not even a doctor prescribe how you will feel and how life will turn out after surgery.

It is a process and a journey to a destination only you can reach.