Understanding Rare
Chromosome and Gene Disorders
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Sophie Sainty

I have a teenage son Max with a duplication 9p23.1p13 and deletion 9p23.1p23.3) and a younger daughter. Unique changed our lives when we were told shortly after his birth of his diagnosis but also that they couldnt tell us any more about how he would develop. Uniques information and the family across the world which Unique put us in touch with a very similar chromosome disorder gave us hope by telling us all the things that he might do. As a former City lawyer, becoming a ‘stay-at-home’ mum was made more enjoyable by throwing myself into holding coffee mornings and other fundraising events for Unique. A few years later I became a Trustee of Unique and enjoy being involved in the planning of Unique’s strategy and talking to the outside world about Uniques great work.