Wednesday 5 November 2014

Why a blog?

Hello, and welcome to my blog. These pages are intended to be a source of support for anyone who reads it. Also, a source of 'trying to get our heads round things' and an insight into Dregans Journey through life, with his new diagnosis of Myotonic Dystrophy!


I expect the first posts will all be quite deep and detailed, as we get to know who Dregan is, and what he has dealt with in his life so far. Also, What is Myotonic Dystrophy? How does it affect him? How WILL it affect him?  There is A LOT of history that has led us here, and those struggles are not likely to end any time soon, but I will try to keep it as informative and rant free as possible - although I can't promise anything!


This is a very new thing for us, having only received this diagnosis very recently, so the journey will start with 'what happens now?'. It is set to be a complicated journey, which is going to last Dregans entire life - I hope we can gain some peace and understanding from writing it down in this blog, and sharing stories with others who may be in a similar situation. I will document appointments and meetings, information gained, progression - and Dregans personality. Lets make lots of good memories to add to his story!


Yes, he has Myotonic Dystrophy, and yes, it has affected him profoundly, and will continue to do so - but Dregan is AWESOME! I want to share his achievements and his fun and his general wonderful-ness! I am sure we will have down days, but I hope to keep a positive frame of mind in these pages.


So that answers the first question...


Emma-Jayne
x


Dregan 2012 - Aged 12.5!






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