Living with a sight impairment.

christinaimage4Hi all, let me introduce myself and my family. My name is Christina Beeston and I am married to Tony. We have 3 fantastic children Ryan, 14 Charlie,11 and Tamyra 10. We live in Lincoln, we are a very close family and enjoy spending time together and exploring things. We try to make things better when things get tough and look upon life as you should every day at a time.

 

 

 

 

Okay here goes,

Growing up as a child for me was really tough, I struggled with my sight, my parents were told that I would have poor vision due to having Nystagmus and being very short sighted. Glasses helped a little, but back in my day the NHS glasses were not very impressive, so for years I wouldn’t wear any. I had a squint and also a wandering eye.

christinaimageI met and married Tony and after a few years decided to have children. Ryan was born a healthy baby, although a difficult birth. After a few years we decided to try for another, Charlie then came along, a beautiful baby who cried an awful lot, you couldn’t leave him when he was a baby or he would cry. During a visit from the health visitor at his 8 week check, Charlie was laid on the floor and she noticed that he wasn’t fixing and following with his eyes, she was quite concerned and booked us in to see the doctor that very same day. When we took him in she took one look at him and said she wanted to refer him to the hospital straight away, she rang through and got us an appointment for the next day. Wow quick or what we didn’t have a clue what was happening,. The next day we took Charlie to see a consultant opthologomist where he checked his eyes quite thoroughly and confirmed that Charlie had Optic Nerve Hypoplasia and severe Nystagmus. He referred Charlie to Great Ormand Street Hospital to confirm his diagnosis. Again this was done very quickly an appointment coming through in less than 3 months. On travelling down there, i discovered the day before that I was pregnant again and was worried that the same thing would happen. However we had to stay strong for Charlie’s sake. We met a fantastic consultant, she ran a load of electrodiagnostic tests on him and double confirmed that Charlie had ONH. Whilst we were there she decided to test me as well, just to see if anything was wrong with my eyes, and low and behold I had exactly the same condition as Charlie. Knowing this made me understand why I struggled all those years with my sight. Unfortunately there is no cure for our condition. We would just have to get on and live with it.

christinaimage2Over the years as Charlie has grown he has always done what he wanted to do, we as his parents never wrapped him up in cotton wool we let him do what he could, yes we worried if he climbed, but when he fell he got back up again, he knew his boundaries, we taught him from such a young age that just because he had little sight didn’t mean that he couldn’t achieve what he wanted.

Growing into a wonderful chap, Charlie made sure that he did what he wanted, when he started school he had support from all areas resulting in him being a clever little chappie. However over the past year unfortunately Charlies eyesight has deterioated his vision dropped from 6/36 down to 1/60. This was a shock and again a load more tests were carried out, after being referred to Leicester the diagnosis on top of everything else Charlie has Ocular Albinism which is connected to O N H. My sight too had been going but i just put it down to age, but No they checked me and Yes I have it to. So me and Charlie are alike in more ways than we think.

Charlie has just recently started secondary school and has settled really well, as it turns out he is the only child in Lincolnshire at Mainstream registered Severely Sight Impaired and even though it is the first time his school has had a child with this condition they are really pulling out all the stops to help him in anyway they can, to say the least we are impressed.

christinaimage3However, looking to the future for Charlie we are looking at New College Blind School in Worcester for him, we went for a visit and were impressed with what they do and the equipment they have to help their students. A possibility for Charlie well maybe, he goes for an assessment very soon so time will only tell. Will keep you all informed.

That’s it, my life and Charlies up to now. I could tell a lot more but will keep it till next time.

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