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Showing posts from August, 2015

Across the world in seven days

It’s hard to describe the feeling. The feeling when you walk into a room full of strangers who you instantly recognise as family. People from all corners of the globe who are linked intimately with you through random happenstance (I only just learnt that was an actual word- I LOVE IT). People who get it, who face the same struggles daily and who understand, really understand, how crazy life is without you ever having to utter a syllable. Last week I had the incredible opportunity to attend my second conference for families affected by dup15q syndrome, the rare chromosome disorder my son B has. The dup15q expresses itself differently in different individuals, but the overarching symptoms are the same throughout- low muscle tone, autistic features, communication difficulties, sensory processing disorders, cognitive disabilities and seizures. Living with this cocktail of issues is hard, and a big part of that difficulty is the isolation factor. Families with kids of the same age are now …