My story By Gail

I'm married to Tommy and we have two visually impaired children - Conor and Niamh.

Conor was diagnosed with Ocular -Cutaneous Albinism when he was less than 24 hrs old - we were devastated - what was albinism? how would he be affected? Why us? Why our child?  All of a sudden the life we had envisaged for ourselves and future family had changed without any warning.  We hadn't prepared ourselves for dealing with a disabled child - getting information from the hospital was extremely difficult as no one was prepared to give us a concrete answer as to how Conor would be affected and there was no support or help offered. We had no where else to turn except for the Internet which of course the hospital had told us not to do because it was full of "horror stories".

We hid Conors condition from all of our friends and family - we didn't want him labeled.  But every time someone commented on how beautiful his hair was or how they would kill to have hair that colour at the back of my mind as i smiled and said thank you I wondered what they would say if they knew what his white hair really represented.

We had been asking questions about Conors condition - and we were referred to see a geneticist, but before an appointment came through I was 12 weeks pregnant with baby number two - now what?

We saw a lovely man who gave us a basic biology lesson on genes and explained that both parents were responsible when a child is born with albinism as they both had to pass on the same faulty gene and explained the odds of us having another child with albinism ( a one in four chance).  There was no tests that he could do and to be honest at that stage the deed was done and all we could do was wait and see. 

When Niamh was born 4 days after Christmas with the same shocking head of white hair i knew immediately that she had albinism as well - but at least this time there was nothing new that the hospital could tell us.

We went on with daily life attending hospital appointments but still not really understanding or knowing how much Conor and Niamh could see but noticing that compared to our friends children they struggled visually.

After Conor turned two he was diagnosed with Autism - I remember thinking why us - surely we had enough on our plates - but what choice did we have?  Now on top of our hospital appointments we had weekly OT and Speech and Language appointments to deal with as well.  But Conor struggled visually especially with picture matching and someone suggested contacting RNIB - I went home and said to Tommy - they want us to contact RNIB - why would we do that our kids are not blind?  But I phoned anyway - taking any help we could get - they put us in touch with Social Workers, Peri Teachers and most importantly Angel Eyes NI - a newly created support group for parents of blind and visually impaired children.

We have not looked back - we are in touch with people who know what we are going through, we have developed a better understanding of our childrens condition and emotionally feel that we are better equipped to help them with the difficult journey that is ahead of them.

 

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