Disability with no diagnosis

Orange is part of a group of people that are far greater in number than you might think. This group is made up of people who have disabilities of no known cause.

In many ways, our lives are not that different to people who do have a diagnosis for their disability. Orange has the same education, health and social needs that we need to find a way of meeting, he just doesn’t fit into a box, or onto a ‘care pathway’ or recognised plan of any kind. This is both a challenge and an opportunity!

Not knowing why your child is disabled can really throw a parent off track mentally and emotionally and can leave you feeling completely lost. We are finding our way through life largely in one piece thanks to a wonderful charity called SWAN UK, through which we have made a huge network of lovely families with undiagnosed children.

SWAN stands for ‘Syndrome Without A Name’, so called because while a person might have a number of disabilities, difficulties or health conditions that might indicate a syndrome as a diagnosis, no syndrome has yet been identified.