However, 6 months later at Simon's regular eye check-up the optician asked if we had been to see the opthalmologist and we told her what our doctor had said. She was not very happy and said that she would talk to the doctor personally and that we were to make another appointment to see him and insist on a referral. The referral was the start of many visits to many different hospitals over the next year and a half, before we finally saw someone who told us that Simon had a degenerative eye disease called Retinitis Pigmentosa and could possibly be blind by the age of 15. On the retina of our eyes we have rods and cones which reflect light, thus helping to produce the images we see. These rods and cones are normally regenerative, but in people with RP, once the rods and cones die the reflective area becomes less and they develop tunnel-vision or blurred patches within their line of sight.

Once again we were devastated and once again, because there was no family history of such things, we were told 'it just happens'. There was no information available to take home with us and what the doctor had told us left us so shocked that we could hardly remember anything about it. That seems to happen when you get really bad news, you hear the words, but your mind doesn't take them in. All we could remember was the doctor telling us that Simon had night-blindness and tunnel vision already. All of a sudden we knew why Simon always wanted to hold a hand if we were out of an evening and why he seemed to fall over his own feet. The combination of the deafness with the RP, results in a condition known as Usher Syndrome. We felt as though our world had fallen apart, our whole future had been altered by this diagnosis.