“She’s one in a million!”

Those are words most proud new parents would be delighted to hear right?

Sad to say however; it wasn’t my extraordinary cuteness the doctors were referring to in the days after my birth, but rather the  congenital rare form of blindness that would change the course of our family’s life forever.

Retinal Dysplasia

Retinal Dysplasia is an eye disease which more often occurs in animals, -dogs for example-than humans.

In fact, my younger brother and I are two of around fifty cases in the whole of the UK to be diagnosed with the condition.

I will try my best to explain what retinal Dysplasia is in terms you might understand, but the nature of this rare disease means that information about it is limited and the few articles you can find, aren’t exactly what you would call good bedtime reading.

So here goes!

If you have perfectly functioning eyesight, your retina, a thin layer of tissue at the back of your eye, uses millions of light and other cells to receive and decipher visual information.

Once it has organised the information, it sends it to your brain via your optic nerve; enabling you to see.

In my case, this process doesn’t happen as it should because my retinas did not develop properly during my mother’s pregnancy.

Though Retinal dysplasia can have varying symptoms, my own strain of the disease has resulted in almost complete loss of vision in both eyes.

I am left with light perception, which is a little bit ironic, given that I am also photophobic as a result of the dysplasia.

No, although I do take a terrible photo; that is not a euphemism for being camera shy!

It just means I am allergic to bright light.

So, when the sun is splitting the trees, I can be found, hiding indoors like the vampire I am!

Finding a cure

Unless you count going out in odd shoes, or buying just one salad onion when I meant to buy a whole bunch, I try never to let my eye condition get in the way of living a full life.

Just like the dimple in my chin that looks like a bum, it is here to stay.

I see no point in becoming obsessed with negative thoughts.

Having said all of which; I wanted to share my story with you this Rare disease day to raise awareness of the condition.

As I said, knowledge of retinal dysplasia is still scant and The only hope of finding a cure lies in discovering how to transplant a whole eye.

Please share my story because the more we learn about this condition, the closer we get to finding that illusive treatment!

My intension was to include an image in this post, showing the effects of retinal dysplasia in humans, but I had no success finding one.

Check out Bella Rose’s video for a more in-depth insight: