I always knew there was something not quite right with Ellis, it always niggled at me. At 20 weeks we were told she needed glasses, at 6 months she was diagnosed as dairy intolerant. She met milestones late, not that I cared I was just grateful we had a daughter after a very traumatic birth. We had lots of referrals to different doctors but were not really told anything - perhaps I was mad I thought. Around 5 they did a series of genetic tests but nothing was conclusive. She is a vegetarian from 2 with food phobia. In December 2016 her dad was diagnosed with HCM - we were strongly advised to screen Ellis as this is genetic. We went to the Brompton for a series of tests with her and we were told on the same day she too had HCM. Blood was taken for genetics which was rushed through. In Oct 2017 we were were told that they both had Noonan's Syndrome.