'Amar a diferença' - a real case of a wonderful child diagnosed with Optokinetic Nystagmus

When I moved from Portugal to England I was taken straight to the second year of a BSc Hons in Biotechnology for I had already completed basically 75% of my degree in Biotechnological Engineering (in the Algarve). I remember that in the first year in the University of Nottingham I was given the so much needed freedom to research on a topic of my interest, produce a dissertation on it and add my own future perspectives on the chosen subject. I had always been mad about endocrinology but that time, whilst I browsed through many different medical issues, I was confronted with an incurable disease that caused me so much affliction. Unfortunately a cure was still to be found. The image of a young male child that couldn't maintain his eyes still, in order to visually process images. His eye globes were constantly and erratically moving up and down, left to right and left again, in rapid nervous tweaks that had to be prohibitive of the normal perceiving of spaces surrounding him. I thought, how could a child interpret and absorb information with such 'frenetic' irregular ocular movements... plus all the extras that derive from that condition and are not immediately 'visible' to anyone. It had to be utterly incomprehensible; from my point of view.

I immediately started reading and writing about the topic in order to produce a piece of work on that kid's condition, clinically known as "Optokinetic Nystagmus".

But life sometimes reserves us some incredible moments. As I was on holidays this last August 2018 in Monte Gordo (Portugal), I passed by some kid drawing stuff as he was looking so strangely close to the surface of the table. That made me curious! I approached a small group that had gathered around, to read the banner on the back of a stand and look into some copies of a book distributed on yet another stand. Suddenly, these very incredibly amicable parents that were debiting on their personal experience as parents of a child with... yes... Nystagmus, approached me. I was then given the opportunity to exchange some words with them on their personal experience and how terribly difficult it was from the medical diagnosis (the doctor who informed them of such was unfortunately devoid of the 'empathy gene') to the moment they had to change their lives upside down in order to face the financial obligations that came along. It is indeed a story of courage, dedication, learning, comprehending, accepting, working positively and above all, loving. Loving their son, never stop believing that no disability in a humane world should ever mean blockade, inhibition, total incapacity, misery or disenchantment. They did what we should all do in times of irreversible impact: adapt, learn, share.

And so they wrote a book about their whole trajectory through a personal adaptation/education on the topic, as well as in making sure people out there would understand, accept and include children affected by nystagmus in the normal activities a child can undertake. It was an incredible moment for me when I purchased the book and this kid, Simao Rodrigues, signed it for me, took a picture, spoke to me for a while and showed me once again that nothing in life is 'just because'!

If you also wish to learn more about this child's story, their tackling of preconceptions and ignorant prejudice, their process of becoming familiar to a 'devastating' medical problem, please access here. And if possible engage with the many things that are taking place. There is always something one will be able to do. And because I do not wish to flood this post with loads of scientific information, I leave you with a short yet very informative video by the University of Chicago that can shed some light on the matter, if you're not so familiar with it.

To Simao, his parents, and everyone that allows him to fulfill his life as it always should be occuring - a huge huge huge thank you for this incredible opportunity!

Educating is Loving and Love is Educational!

 [A]

[A] Optokynetic nystagmus, University of Chigago, [https://www.youtube.com/watch?v=ca9vR4ypMbU], last visited on the 7th of November 2018, last updated on the 27th of September 2017.

Post image: TheToxicologistToday with Simao Rodrigues at Monte Gordo - Portugal, August 2018.