Last night we shared our good times, tonight, our tough. Within just a few hours of those pictures, Elliott started to have difficulty breathing and due to the strain, his heart rate was through the roof. We struggled to find ways of helping him and staying out of the hospital. After a very long night, some morphine and finally getting some rest, he seemed to improve a bit today. Nonetheless, to fight off possible infection and lung collapse, we are back to doing hour long respiratory treatments six times a day. Side by side you see our ups and downs but we ask that you please share Elliotts story to help others get a glimpse of the struggle of life with a severely disabled child - exacerbated where there is no understanding of his rare disorder or how to treat his condition. Of the nearly 7,000 known rare diseases affecting nearly 30 million Americans, less than 300 have treatments approved by FDA. And yet the NIH, the major source for funding research into genetic disorders, has had its budget for such research cut. Please help us to spread awareness and support for our efforts to change this unacceptable reality. WishesforElliott.org
Posted on: Fri, 03 Oct 2014 02:05:42 +0000
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