Making memories for our young family as we live with Motor Neurone & Fabry's Disease

A poem

February 8th, 2017

This very nice poem was written for us after we were seen on bbc breakfast and inside out.

The Yorkshire Man

Everyone looks forward to making memories together
Come rain, come shine, whatever the weather
But sometimes, it doesn’t work out as we’ve planned
And the cards we’ve been dealt, are not the hand
We’ve assumed the path, our lives will take
And all our ideas, we may have to forsake

And we walk to road, that none would chose
When delivered a diagnosis, with the news
That one has a condition, that will change everything
With the pain and heartache and the tears it will bring

For this courageous man, I write these words
Whose love for his family, flies as high as the birds
With determination to never give ina
And against all odds, he’s resolved to win

He’s a man from Yorkshire, who’s fighting a disease
That’s robbing his movement and his voice, it will seize
But with his strength of purpose, he remains steadfast
To fight this condition, he did not forecast

He knows he is already, losing his voice
So using technology, has become his choice
To preserve, how he sounds, for his girls and his wife
To remember him by, when he no longer has life

As one’s voice is as unique, as one’s face
He’s decided to record and to embrace
The help of thirty voices, that sound like his own
With its modulation, its rhythm and its tone

By moving his eyes and the use of infrared
He can spell out his words, which the computer speaks instead
But the beauty of this ability, is he keeps his identity
And doesn’t sound like a synthesized, generic non-entity

A preprogrammed voice, would just not be him
It would confuse his girls, which would be grim
So this machine makes all the difference in the world
For himself and his wife, but especially his girls

Diagnosed with MND, the cruelest disease
However much one prays, however much one pleas
It relentlessly progresses, as it steals one’s health
And carries on robbing, with its insidious stealth

But this concentrated man, has focused his mind
To not be its victim and has not resigned
Himself to be stopped in doing all the things
That makes him happy, that life brings

From zip wire and to driving, a Formula One
And flying a microlight, just had to be done
And tackling the terrain of the Yorkshire Moor
In his electric wheelchair, 4 x 4

He wants to make others more aware
Of this disorder, that’s so unfair
Six people in the UK, are diagnosed each day
And a third of these, in a year it will slay

So my thoughts and praise are with this man
Who against all odds, does what he can
Whilst he battles with this beast, he can’t control
But to enjoy every moment, now is his goal

I speak because I witnessed my father fight
This dreadful disease, with all his might
More money must be found, for a cure
So we all can be really sure
That this beast can be controlled
Before more stories like this, will be told.

written by Cohl Warren-Howles

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