My Story Sara, Founder of Angel Eyes NI

I am a mother of three fantastic children.  When my eldest is daughter was born – she is now 14 years old - we sailed through every milestone and I never thought about disability - it just didn’t apply to me and my daughter.  

When my twins were born prematurely at 29 weeks, in 2005, my world came crashing in around me.  Suddenly lots of bad things could happen and disability was a real possibility.  After 10 long weeks in hospital my baby son and daughter were discharged as “healthy”.  Kevin and I were delighted and relieved to be bringing them home after a traumatic time in hospital to join our family but I had a niggling feeling about their eyesight.  

As they progressed through the weeks I became more and more concerned about their eyes – they didn’t respond to anything visually and their eyes were starting to move from side to side.  I always mentioned this at any appointment with the GP, paediatrician or health visitor but it was always put down to their prematurity.  

Eventually when they were 6 months old they saw another health visitor who straight away picked up the movement of their eyes and said she thought it might be nystagmus and would refer them urgently to the consultant Ophthalmologist.  I went straight home, got on the internet and started to search for clues and answers as to what this was.

That’s when I stopped sleeping.  

It wasn’t good but what kept coming up was that nystagmus could also be part of a condition called Albinism – another word I had never heard of.  My twins had heads of lovely sparkly white hair which I absolutely loved and lapped up all the compliments they got because of it – suddenly I didn’t want it to be so “white” as that could mean something that I didn’t want to have to deal with. Thankfully the appointment with the Ophthalmologist came through quickly and they were due to be seen the following week.  I went through every emotion that week fear, worry, disbelief and always at the back of my mind thinking this could never happen to my family – this would be too unfair after enduring the weeks in intensive care with them – both of them - wouldn’t it?

The day arrived to see the Ophthalmologist – I don’t think I had slept for more than a couple of hours at a time.  The twins were put through different tests by different people who were all very nice but wouldn’t say anything about their vision.  Then in we went to the consultant who when delivering the diagnosis of Ocular -Cutaneous Albinism seemed to be surprised that we hadn’t worked it out for ourselves saying their hair was “startingly” white.

I think I went into a black hole of despair at that point – could I cope with this?  Although I was researching everything I could, I didn’t want to talk about the visual impairment to friends and family as they kept telling me “everything will be fine”.  This made me really angry as how did they know – they couldn’t understand the pain I felt everytime I thought about what the future would hold for my beautiful babies.  

I started to distance myself from everyone close to me including my partner – I was really angry – I was grieving - but I didn’t want people to think that the babies visual impairment was a problem to me – I didn’t think anyone could support me as they couldn’t understand how I was feeling.  I just wanted to enjoy the twins and not think about anything bad. I went on like this for another year until I couldn’t cope anymore. I felt really isolated and alone.

With great help from my GP, counsellor and anti-depressants I started to make friends again with my nearest and dearest and the future started to seem a little brighter. This is when I contacted the Vision Support Teacher and asked if she could give my number out to any other parents who would like to meet up.  She did and this is how Angel Eyes NI started in April 2007 with 12 families. The support I have received from other parents never stops and hopefully that is reciprocated.  We continue to grow and expand our network.  I am a firm advocate of the voice of parents and strongly believe that if a parent has knowledge and education it will improve the lives of our children.

My twins are now at mainstream school with a Statement of Special Educational Needs and enjoy every aspect of life and you know what we as a family are all the better because of them!

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