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I cannot imagine the heart ache of those of you who championed Terri Schiavo on the scene with so much personal devotion. You bought her a little more time, encouraged so many and importantly, you gave Terri Schiavo who had no voice a presence in the national consciousness.

Even though it is a change of course, it remains critical that the story of Terri Schiavo remains whole. In surfing for articles about her, I have found journalists wanting to parse her story to fit their own needs about living wills or bulimia, etc. The media wants to make it a conservative/liberal issue.

The circumstances of Terri Schiavo's life and death cut across a spectrum of beliefs and connected many disparate people. As you have time, continue to write or blog or call when her story is watered down.

Though I want changes in judges and representatives and laws and will continue to advocate for that, my biggest fear is that the story of Terri Schiavo will become distorted. I work the hardest at maintaining the issues surrounding her.

As I continue to send letters to media, journalists, bloggers, etc. I have narrowed the facts of what happened to Terri Schiavo to a few lines. I know there are more facts but sometimes people won't read the whole thing.

This is my primary body of a letter:
"1. She was awarded 1.4 million dollars by a jury for treatment and therapy. Court records indicate NONE of those funds were expended to that purpose. Court records indicate $350,000 of those funds were expended to litigate her death.

2. She was sentenced to death without representation. The closest representation was the guardians ad litem, both of whose recommendations for further investigation of her wishes were dismissed by the court.

3. She was placed in a hospice for five years without a terminal illness. Hospice laws, policies and procedures require a terminal diagnosis and short life expectancy prognosis. A hospice is equipped to assist the dying. It is not equipped or purposed to provide for the living – the disabled living.

4. Terri Schiavo was declared indigent at some point during that time. Taxpayers funded her stay at a facility not purposed to her needs.

Thus, there is now legal precedence to obtain a jury award on behalf of a disabled individual for one ostensible purpose and use it for another. Treatment and therapy to disabled individuals who have funds allocated for that purpose can be denied by guardianship powers in complete disregard of the disabled individuals entitlement to those treatments and therapies. Laws and guidelines regarding appropriate facility placement have been ignored, thus making them ineffective. Furthermore, erroneous placement can be at taxpayer expense.

Many disabled organizations, religious organizations and prominent Democratic party members intervened on Terri Schiavo’s behalf for these real and documented issues. The treatment of Terri Schiavo was unconscionable bordering on the illegal. Terri Schiavo could not speak for herself and her fate was in the hands of journalists and media who highlight the left wing/right wing feud and distort the core of issues surrounding Terri Schiavo that motivated hundreds of thousands of individuals from all ideological spectrums to activate en masse before it became a media event. Congress, Governor Bush and President Bush responded to activists informed and passionate about these issues despite a lack of organization and media coverage. "

I know it's cold language in light of our emotions but the strength of my emotions is a result of the fact filled list of wrongs and indignities visited on Terri.

I don't mean to be presumptious, but I exhort everyone to continue to respond to the prayer requests, the calls to action and find opportunities to get Terri Schiavo's story out clearly to the media and public. As I have a few minutes everyday, I try to contact some government official, media source, blogger, journalist - anyone. I want to put some facts on their file.

Best wishes.