Continuation the Journey Continues.

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

Elijah's Legacy - The Journey Continues

I have been working on so many things since I last posted. I was blessed to be able to share the the times of remembering of Elijah with the videos of the last post. Many people wrote me and were touched by the physical farewell part of the Journey for Elijah. Indeed it is my priviledge to share that part of the Journey. You this blog has always been a raw one and many people have journeyed with us and so that's a glimpse. I hope you like some of the remodelling that I have done on the blog new front image andalso tried to get the blogs on the side sorted and updated as well. I have been working on a number of projects mostly Angelman Syndrome related and all inspired by the journey with Elijahan most of them online.

Before I do let me tell you also another person that has inspired me both directly and indirectly - and this is a link to his latest post on his blog - Bella Bash 09 - speaks volumes about AS - this person is Regie Hamm -

American Idol Songwriter winner 2008 with Time of My Life sung by David Cook, he isalsoa dad toIsabella who has Angelman Syndrome - I am inspired by his drive and passion for awareness and raising $$$ to support research.

To be continued....