Captain Braveheart Aaron’s Blog – Rare Disease Awareness Day 2017

  They say a picture tells a thousand words, so in this special Rare Disease Awareness Day blog I will share with you lots of photographs.  We will use these photos to show you how the orphan disease ROHHAD has completely changed my sons physical body; how it has left him with a lifespan unlikely […]

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Posted on 1st March 2017


YOU NEED TO SEE THIS PLEASE WATCH THE VIDEO This is Aaron’s video message that he wants everyone to see.  In it he tells you all how ROHHAD has affected him, what his future may hold and how he really needs YOUR HELP.  Please take the time to watch Aaron’s video to YOU and then […]

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Posted on 23rd January 2016

Some Photos from our Recent Event ‘Picnic in the Park’

Hi we thought we would share with you all a video of photos from ‘Picnic in the Park’. Thank you to Gerry McGrane for photographing the event and making the video. We all had a brilliant day and appreciate the support received at the event.    

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Posted on 16th September 2015