You have to find out from other people what's out there. Mary Williams was given no help to understand her son's condition. Lack of relevant information can have harrowing consequences. One family was told that their13 year-old son had Usher syndrome, but nobody explained the significance of the diagnosis. It was not until four years later when their son was beginning to get sight problems that the family learnt what Usher actually meant, by which time they had lost valuable time to prepare for their son's future.
Inappropriate information is equally unhelpful.
Many families often feel that health professionals give information in a very negative way. It makes such a difference to them. Hannah Levey agrees. The ophthalmologist told us that Joshua would never be able to read - in fact he can read large print. You don't want them to be unrealistic but they don't see that they are taking away your hope.