This Saturday, 13th April, marks the first Undiagnosed Children’s Awareness Day. Before Orange, I had no idea that children with disabilities could be without a diagnosis but there are many, many children just like Orange who have complex needs with no identifiable cause.
SWAN UK, the charity for children with Syndromes Without A Name (SWANs), is launching Undiagnosed Children’s Awareness Day to raise understanding of undiagnosed developmental disorders. This is a vitally important job because there is still widespread misunderstanding among not just the general public but also teachers, medics, therapists and even the families of SWANs about what being undiagnosed means. Often there is a false belief that being undiagnosed means your child will get better or that their problems are not as worthy of help as those with a label.
As a family with a SWAN, historically it’s been hard to know where to fit. With no diagnosis there are no dedicated ‘societies’ or ‘support groups’ and no pathway to guide you through the challenges involved. That’s where SWAN UK comes in. This charity is changing the lives of many SWAN families and we hope that Undiagnosed Children’s Awareness Day will reach out to more families of SWANs and show them there is a place for help, support and genuine lovely friendship. And a fair amount of talk about poo. And wine. Not usually at the same time.
Please spread the word and, if you’d like to, turn your FB page pink and blue in support. Page covers and profile images can be found here on the SWAN UK page