My Story

At the age of 7 my little boy was diagnosed with a rare condition called KBG syndrome. He is one of 78 people diagnosed in the UK, and around 700 people worldwide. The odds of having KBG are 1 in 19million. 

Unique are the wonderful charity who provide us with information and support and put us in touch with other families affected by this condition, and through who we have found our wonderful tribe!

Having such a rare diagnosis can make you feel lonely and scared but Unique's support helped us feel as though the weight had been lifted off and our questions could finally be answered.

Their research is invaluable. We love our Unique family 💖! We want to raise money so Unique can continue to provide research and support for more families receiving rare diagnosis 💕