Meet Hannah and Katie

Alström Syndrome is very rare condition, affecting 1 in a million people. Meet two girls who are even rarer: twins Katie and Hannah who have been diagnosed with Alström Syndrome.

Ruby’s daily battle

Ehlers-Danlos syndrome (EDS) is a collection of genetic connective tissue disorders which affect collagen. Symptoms are far-reaching. Ruby, 19, explains how it affects her.


Ten year old Adam suffers from the genetic condition 22Q11 Deletion Syndrome (DS). Many children are left undiagnosed leading to a life of struggle and misunderstanding. Adam finally received a diagnosis after six years of emotional upheaval for his family.

Our Angelman Journey

We live in Dorset with our sons, Samuel, 14, and Willoughby, 11. We run a landscaping business and love living here with our two gorgeous boys.