Sunday, February 26, 2012

Christian's Conquest releases first video

Hello everyone! We have finally released our first video, chronicling the 17 years Christian has fought hard against this terrible disease.

I actually started this video in February of 2008 but could get no further than 104 seconds into the song. I think you'll see that truly this video was not capable of being finished until now... with the amazing developments over the last few years.

Please enjoy the song and enjoy the video.

I am hoping to release a separate video to celebrate Rare Disease Day this Wednesday! The HUS community is working to post videos from all over on Wednesday and I sure hope to finish our entry in time.

Please talk up Rare Disease day to your friends and family - raising awareness of those struggling with lifelong disease and bringing hope that they, like our son, can find comfort and cures. That is the essence of the global highlighting of Rare Disease Day.

Lastly, Christian, Aida and I will be traveling to Connecticut to the home office of Alexion Pharmaceuticals to speak on Wednesday at Rare Disease Day events. Look for some updates later this week on our travels!

Take care.

Hope and love,

Kiki's Dad

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