My partner Tim and I had been concerned about our daughter Eleanor’s eyesight for a few months.  It started when she began to hold things closer to her face, then she would drop things and feel around for them despite them being right in front of her. We also noticed that she had gradually lost interest in her favourite films and tv programmes and had become clingy and nervous when out in public places.

As a child I had poor eyesight, I wore glasses from a young age and assumed Eleanor was having similar vision problems. We booked an appointment with a high street opticians to hopefully get some answers. Eleanor wasn’t very cooperative on the day and the Optometrist suggested we book an appointment with our GP to get her referred to a hospital Ophthalmologist, so they could perform some more comprehensive tests. We decided to try one more time with an Optometrist who is a friend and someone who Eleanor is familiar and comfortable with. It was clear when the tests were being performed that Eleanor’s eyesight was definitely suffering and it was mentioned that her optical nerves looked ‘pale’. When we got home my partner did what every concerned parent would do and searched for ‘pale optical nerves’ on the internet. In my mind I honestly thought she just needed glasses and refused to believe it could be anything more sinister.

  1. Tessa 28th May 2015 at 22:38

    my darling Kelly I have just read this from beginning to the last blog and if I could have stepped into these pages to have hugged you both to even try to take a milligram of your suffering away I would . It’s heartbreaking knowing you cannot do anything but administer the treatment for your darling Princess Eleanor ❤️❤️❤️
    I truly wish for that miracle and hope knowing you have lots of love and support for you and your amazing family helps even the tiniest bit .
    Love to you all

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