Caoimhe’s Journey- by Mummy Deirdre Burns

Your PostsCaoimhe is four years old and is my youngest daughter. She has two older siblings, Cara, 10 and Lorcan, 14.

picture-of-caoimhe-hugging-her-mumWhen Caoimhe was born, she was a healthy 6lb baby girl with no problems at all but at a year old, I started to notice that her right eye was turning in. I mentioned it to the health visitor and she referred us to our ophthalmology dept at the local hospital. Her eye tests showed that she did need glasses and we attended regular check ups. Her sight was getting progressively worse and so was the turn in her eye. An ophthalmologist even commented that she’d never seen a child so young with such a strong prescription. In November last year, they decided to patch her eye for two hours a day for eight weeks. However when we went back for the review appointment, she couldn’t see anything out of her right eye. I wasn’t told this immediately, staff were making frantic phone calls and writing emails whilst saying very little to me. They were using medical terms about the colour of her optic disc, which meant nothing to me but they knew the implications and obviously didn’t want to worry me before investigations had been done.

picture-of-caoimhe-wearing-a-riding-hatCaoimhe was admitted as an emergency to hospital for investigations. Over the course of three days, she had an MRI, lumbar puncture, blood tests, X-rays, ultrasounds to try to find out what had caused this very sudden sight loss. All of the results came back normal which, although I was relieved, didn’t tell me what WAS wrong. After a course of very high doses of steroids to try and slow down the process of sight loss, we were told they didn’t have any effect and the possible cause was genetic. Bloods were sent away and we were told to wait for results.

A year has passed and we have only just got some results back showing negative for some more common conditions. They’re now doing more genetic tests for more rare conditions. Dominant optic atrophy has been mentioned but we are still not sure if this is what has caused her sight loss. We sit and wait for a diagnosis, along with her anxious consultant.

picture-of-caoimhe-wearing-a-white-party-dressThroughout the past year, Caoimhe has coped incredibly well. We were told that her eyesight has probably been affected since birth so she knows no different. I, on the other hand found it incredibly difficult to deal with news that she has a condition which will probably result in total sight loss. It was like dealing with a bereavement, all my hopes and dreams for her future had suddenly disappeared. How on earth was she going to cope as an adult, would she go to university or have a career? Would she be able to see all the sights I wanted her to see? It was just too much to deal with.

Over the space of a few months, we had incredible support from Blind Children UK, RNIB and Angel Eyes. All whom in different ways helped and showed me that life could still be relatively normal for Caoimhe, she would just need extra support.

Caoimhe never stops smiling, laughing, playing and being a real cheeky devil. She keeps me going and at times even reassures me that she’s okay. She’s a very strong character for being only four and I know her future will be bright!

If you would like to read more about Caoimhe then she has a dedicated Facebook page sharing updates https://www.facebook.com/Caoimheseyespy/?__mref=message_bubble

Thank you for reading 🙂

 

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One thought on “Caoimhe’s Journey- by Mummy Deirdre Burns

  1. Hi Deirdre, Thank you for sharing yours and Caoimhe’s story, I’m sure it will be really helpful to other parents going through similar things. It is always amazing how resilient and positive children can be! What a little superstar 🙂

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