To my beautiful boy, You’re 1 in 100,000 in every way

My beautiful little boy was diagnosed with Aniridia, a rare genetic eye condition (1 in 100,000), at 6 weeks’ old. In simple terms this means that he was born without irises and with an under-developed fovea. The condition means that his sight is currently moderately impaired. However, due to the progressive nature of the condition and associated complications, this is likely to deteriorate further as he grows older, with many being considered as severely sight impaired or blind by late childhood or in their teenage years.

As today is Rare Disease day I wanted to share with you a poem which I wrote to express the emotional rollercoaster his diagnosis set me on as parent and about how the lack of information on rare conditions initially left me feeling powerless and alone.

Your little eyes were as black as night,

That shone like marbles when they caught the light.

Your tiny fists were always so tight,

and instead of comfort my touch caused fright.

I often asked ‘do you think he can see?’

As your gaze never seemed to fall on me.

‘He’s just a newborn’, the reply would come,

‘don’t worry it takes time, he will soon see mum’

But as the weeks past, my fears only grew.

Something wasn’t right, all along I knew.

But that didn’t make the shock any easier,

on the day we found out you had Aniridia.

As we sat in Moorfields with you cradled in my arms,

the nurses questions and looks soon raised the alarms.

In the waiting room we sat and awaited your fate,

as the hours passed and it turned late.

Finally the door opened and it was your name the consultant called.

I looked down at your face and my heart just stalled.

They diagnosed a condition, which to us was unknown,

as I called your dad and cried down the phone.

The next few days were all a blur.

Google searches bought nothing, but further fear of what it could infer.

I mourned for your future, dreams I never knew I had;

Tennis sessions, driving, playing football with your dad.

Suddenly it seemed as if these things were not possible;

That life would be just battles and obstacles.

If only back then I could have told myself ‘wait’,

‘He’ll surprise you everyday and the future will be great’.

‘He’ll inspire you with his determination and grit,

and you’ll be one proud mama, and not ashamed to admit’.

‘A diagnosis will not define him or the value he brings,

And his journey will bring joy and be something to cheer about and sing’.

‘For each little triumph no matter how slow or fast,

will burst your heart with pride and that feeling will last’.

So here is to your future, whatever you choose to be,

you can achieve whatever you dream, just you wait and see.

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