tag:blogger.com,1999:blog-7101792234762615700.post1482881218013368366..comments2023-12-22T17:52:24.075+01:00Comments on A Christmas miracle!: Apert syndrome - an update!Unknownnoreply@blogger.comBlogger1125tag:blogger.com,1999:blog-7101792234762615700.post-24447604796849993522012-10-13T08:40:32.710+02:002012-10-13T08:40:32.710+02:00oh they are so precious thank you so much for shou...oh they are so precious thank you so much for shouting out for them! When Tilly was diagnosed with Smith Magenis Syndrome i remember looking through a list of syndromes i had never heard of before in amazement at this 'secret' world i had suddenly found myself in!unusual syndromes may scare people, sms, my tilly's syndrome on paper reads like a nightmare....global delays, sleep dysfunction...chronic,anti-social behaviours, self harming.....its goes on and on plus with only 600 cases worldwide support is short! but in reality kids with sms are amazing, funny, wonderful souls. Tilly MAKES people fall in love! i hope people will embrace that and not be scared away from a syndrome xxxxxAnonymoushttps://www.blogger.com/profile/12648229748088235109noreply@blogger.com