ALBINISM AND GEORGE
We were very shocked when we found out that George had Albinism. My wife Ruth explains what happened.
'Chris and I have dark hair and 'normal' skin. Our first child Bethany was born in June 1997, perfect in every way. When our son George was born in July 1999, he seemed a perfectly normal, healthy baby. His fair hair and blue eyes did not surprise us, as both George's Grandad and one of his uncles were equally as fair at birth.
We realised that George had a squint early on, but thought that this could be easily corrected. Our health visitor referred George to see an eye specialist following his 3 month check. Our first appointment was with an orthoptist who told us that George would need surgery in due course to correct his squint. She also asked us to come back the following week to see a Consultant who would check the focusing in his eyes.
It was at the second appointment that the possibility of Albinism was mentioned. We were shocked and distressed. We knew little or nothing about the condition and were terrified at the prospect of our son having something "wrong" with him.
The following 3 months were agony. We were told that a firm diagnosis could be made at about the age of 1 and until then his eyes would be monitored at regular intervals. It is very hard to assess how well your 3 month old baby sees. When they smile at you, are they responding to your voice or your facial expression? We found ourselves continually testing George by creeping up on him to see if he reacted. On some days, I could believe him to see perfectly well and on other days feared the worst.
Relief came in the February when George was 7 months old. We saw the Consultant who runs the Albinism clinic at Great Ormond Street Hospital for Sick Children, who confirmed that George had Albinism. At last, we knew what was wrong and we could get on with dealing with it.
George is a very happy and determined little boy. His development to date is excellent. He is talkative, loves singing and has a great memory for tunes. His favourites have included the theme tune to The Great Escape (during Euro 2000), Spanish Harlem (Mamas and Papas) and numerous nursery rhymes.
He is a great mimic and Chris takes great delight in teaching him unusual phrases. The current one is 'Ding . Dong, Hellooooooo', in the style of Leslie Philips!
At the moment, he is completely unaware of his condition. It has not yet stopped him doing anything. I am sure that the differences will become much more apparent when he reaches school age. Our greatest fear for him is the teasing which may well become part and parcel of his life as his fair colouring sets him apart from the crowd.
We are lucky to have very supportive family
and friends. His sister Bethany adores him and will be a great asset to
him in years to come. We are determined to give George a happy and fulfilling