When Joey started primary school, I made an appointment for myself, his father and the relevent people involved in his care, ie our good friend Heather his Peripetetic Support Teacher and his health visitor to be present at the meeting. We discussed how he would manage moving around the school and help that could be given him.

A Raised Board for placing on a desk was provided for the school and one for at home for homework. A raised board makes it easier for him to see and write he work out. A hat with a light on. the light shines from the back of his head so it does not shine in his eyes.

A CCTV type thing was given to the school which when his work was placed under the unit would enlarge the print onto a screen enabling him to see it more easily.

It was also discussed as to how the other children would react to him. The Headteacher Mr Kelly was fantastic, he held an assembly and explained to all the children that they were to help him if they saw him struggling and guide him when necessary. This was an excellent move and Joey obtained lots of friends especially the older girls!!! they loved looking after him

As this is a rare condition, 1 in 17,000 children are born with this condition in the UK each year. Not alot is known by the doctors so most information can be obtained through American Websites.

There is a lot of prejudice regarding this condition in the media. The media, films and books portray the people with the condition as being 'Evil' or 'Freaks'. This is not helping. We noticed this prejudice more when Joey started high school. The other children have been down right nasty to him. He comes home very distressed sometimes and it is heartbreaking to see. We need to educate people.

People stare at us in the street, it would be better if they came over and asked us why the boys wear dark glasses and have such blonde hair.

Joey has been in the local press and Granada Television regarding this hatred towards his condition but it has not helped much.

Quite a few children with this condition are Statemented at school in order for the school to provide the help and equipment they need to move through school smoothly. Shanley my youngest has a Statement but we are still fighting for one for Joey who does not receive enough help at school. We found getting Shanley statemented fairly easy as he has also got learning difficulties, lax ligaments and rotated femurs and attends a Special Needs School. The school is excellent and Shanley is doing very well.

Worksheets need to be enlarged, when viewing the TV they need to sit near the screen or the chalk boards or smart boards at school. Text needs to be enlarged on the computer.

Again with Joey not all of his work is enlarged by teachers. They do not seem to understand the difficulties he has and to be honest I am quite fed up with trying to tell them. My husband (Joey's step dad Pete) bought on E Bay a photocopier so we now enlarge his work at home. Bit of a drastic step, but it works for us.

If you wish to speak to me personally you can call me on 07859 848772.