Kirsty's Mum, Claire shares their story of finding out that her daughter has a rare genetic condition.

When Kirsty was diagnosed there were only 60 other people in the world with the same condition as her

Kirsty was born seven weeks premature so it didn’t raise immediate alarm bells when she didn’t reach her developmental milestones, such as sitting up or smiling. She was small for […]

When Kirsty was diagnosed there were only 60 other people in the world with the same condition as her Read More »