What Dying Kids Can Teach Our Government About Health Care Reform
August 4, 2009 by Chris Hempel
Filed under Videos
Addi & Cassi Story II from Addi & Cassi Hempel on Vimeo.
Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease like Niemann-Pick Type C (NPC). This video was made when our twins Addi and Cassi could still talk and sing — they have lost this ability due to “Childhood Alzheimer’s.” I hope everyone in government will watch this video and look at our website to understand why the entire health care process is broken, especially drug development. Would someone please forward my video and website to Nancy Pelosi, Harry Reid, Arlen Specter, Kathleen Sebelius, President Barak Obama and others.
Rare diseases that afflict children like the cholesterol disease Niemann Pick Type C could lead to treatments and cures for millions of people. When will anyone pay attention? Maybe this year Oprah will consider covering Addi and Cassi since the cyclodextrin we are giving Addi and Cassi not only might save them from this deadly cholesterol disease but all kills the HIV-AIDS virus!!
The story of Addi and Cassi is an important one and should be promoted more. We are currently in election debate season, and no-one is discussing these issues in detail. “Childhood Alzheimer’s” is a tragic lysosomal storage disease, and deserves more attention. It is suspected that many patients affected by NPC are undiagnosed, owing to lack of awareness of the disease and the absence of readily available screening or diagnostic tests. Readers, please do what you can to spread the word.
My thoughts and prayers go out to victims of this disease.
-Alice
Strappy Sandals
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Hi,
Sandy here from Canada. As I have seen your comments & I am obliged that you have share a lot of information with us.
Thanks
Sandy
women’s sandals
More should know about this, and realize that the American Health system is broken when children like these lovely twins must suffer from something that might just be helped by drugs that cost enough to bankrupt most families. Although stars like Oprah can help, the system must change and the health care benefits must be open to all. Please stand behind President Obama’s efforts to open the system up to all American families and perhaps the drug development to expand so that families like these will not continue to suffer. In many ways I am so grateful to be a Canadian. Our system has flaws and perhaps needs work but we all have access to it. To the Hempels, I hope you find the answers you are looking for and I wish with all my heart that the twins can recover what was lost.