It is at the Bellabash site - www.bellabash.com that you can here Regie's song Angels wiating on wings. I was captivated the first time I heard this trak like the eyes of a stunned possum caught in the headlights. It was a preface to a DVD presentation by Dr Ed Weber from Foundation for Angelman Syndrome Theraputics FAST which was recorded in Australia earlier in the year. I watched this introduction and was touched by the wondeful smiling photos of individuals with AS that accompanied the description of Angelman Syndrome and the work of FAST . I though it was great but was quite overwhelmed when as the credits were about to roll here was a picture of my son Elijah. Tears filled my eyes as I remembered that Meagan mum of Molly from Cairns Australia, had asked me several months ago for a photo of Elijah to use in a collage. I was very blessed to see Elijah there.
The most recent project that involved Elijah was to work with Maiddy, a member of the Board of FAST
The project was to work with Maiddy to contact other Angelman Syndrome Parents whose children had died to invite them to be partof the video project. The video was shown at the FAST Gala which was held in Chicago on Dec 4th - it was attended by Regie Ham and Colin Farrell both dads of hildren with Angelman Syndrome. It was also included on a DVD given to all those who attended the Gala which raised funds for Angelman Syndrome Research. Parents photos of their children to be honoured at the end of the video a number of families did and so this was wonderful to see this come together. I hope to be soon be able to post a link to th video presentation
More to come.... Peace be with you and Yours Darren and Elijah
Tuesday, December 15, 2009
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