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Naomi’s Story, Part 5: Awareness or Support?

  In 2016 and 2017, I started searching for awareness and support within Nigeria. I called hospitals, sent emails, and searched social media for anything related to Coloboma. Every response I got was silence. No group. No foundation. No awareness campaign. It felt like the condition did not exist in our country.

I remember walking into one of the major eye centres in Lagos, hoping to meet other parents like me. The doctors told me they had seen children with Coloboma before, but no one had ever formed a support group or association. There was no record, no follow-up, no awareness.

It broke me. In the UK and US, families were coming together, learning from one another, and supporting their children. In Nigeria, parents were isolated, each carrying their burden in silence.

That gap became my mission. I decided I would not let Naomi’s story end in silence. If awareness did not exist, we would start it.

We continued visiting hospitals for second and third opinions. Most doctors said the same thing “there is no cure.” Still, I kept asking questions. I wanted to know everything that could help Naomi see better, learn better, and live with confidence.

I began reading online and following international groups for parents of children with Coloboma. I read stories from families in Canada, the US, and Australia who shared their experiences and offered practical guidance. Through their words, I learned about therapies, early visual stimulation, and ways to help children build coordination even with low vision. I started practicing these exercises with Naomi at home, buying patches, try to make the other strength the eye by isolating the other eye. turning every small activity into a learning moment. For the first time, I did not feel completely alone.

There is still no single “Coloboma Association in Nigeria,” but some medical associations and journals have addressed the condition. The Ophthalmological Society of Nigeria and the Nigerian Journal of Vitreoretinal Diseases have published case reports on Coloboma, showing that doctors are studying and documenting it. The Nigerian Medical Journal has also published research about it.

That period changed me as a father. I stopped waiting for someone else to help and decided to become the help I wished existed. Naomi became my reason to keep speaking, keep learning, and keep creating awareness one parent at a time. 

But the school challenges continue. 

Comments

  1. Dr Simon16 February 2026 at 06:24

    As a parent myself, reading this really got to me. There’s nothing quite like that lonely feeling when you are searching for answers for your kid and getting nothing back. But honestly, the way you just refused to take silence for an answer is so inspiring. You are doing amazing work for her.

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