What is the cost of a child’s future? The cost of a quality of life? At three, Connie Annakin has it all ahead of her.
All the opportunities, the chances to shine. To dance, as her mum Caroline says. Battling rare Batten disease, she has been handed a death sentence.
It is inevitable that she will die. Had she been born a few years ago, her family would have been faced with no hope.
They would have been packing every day with magic memories, trying desperately to preserve every moment and make the remainder of her life as precious as it could be.
But with advances in medical technology, there is a hope for her. Not a hope that this disease can be eradicated - but that she could grow up. She could live a normal life.
This little girl’s light could shine, she could ride a bike as every other three-year-old does. She could learn to love books, and make best friends, and go to school discos. One day, she could go to university, travel, maybe fall in love.
Every day negotiations continue over costs of the drug, Connie’s life chances are slipping away. In a few months, it could be too late.
There is a cost to save Connie. It would cost the NHS, it would cost us all as taxpayers. But surely there is a price worth paying to give a little girl that chance to dance.
For Connie’s sake, let’s speed up negotiations to give her family the answers they deserve.