December 18, 2013 mcfadyena

Shire Willing to Let Jack Die

I'm the Voice of an Advocate!Shire denied Jack life-saving treatment. They first said no last Thursday, at which point The Isaac Foundation implored them to reconsider. They said no again this past Monday. You can help. If you are interested in joining our fight to save Jack’s life, send me a message. It will not take much of your time, but it will make a difference.
You can also sign a petition for Jack, by clicking here.
The Isaac Foundation has been posting updates of its conversations with Shire. You can read about them on The Isaac Foundation website.
My family and the people around me are excited and busy with the soon arriving holidays. While I participate in the festivities, in my heart sits the hope that Shire will step up to their credo and ‘be as brave as the people they help.’ You can read Shire’s Responsibility statement here. If Jack wasn’t dying, it would be funny. They want to be ‘brave enough to do things differently’, to keep ‘the patient at the heart of everything’ they do, and where my jaw dropped, they state that they ‘constantly ask ourselves, “what’s the right thing to do?”’ Shire, I’m confused. Are you seriously telling us that the right thing to do is let Jack die?
Right now, Shire’s responsibility statement couldn’t be farther from the truth. Although I understand where Shire’s hesitation in granting Jack IT drug comes from, they have failed to dig deeper, to think outside the box and ‘do things differently,’ to find a solution for both Jack and Shire to win. You know they’d be finding a way to get Jack drug if he were their child. The answer is there, it was just easier to say no. Apparently Shire thought we would take no for an answer. You have underestimated us. Shire, start digging deep.
You know that song ‘All I want for Christmas is my two front teeth…’ I have had that song stuck in my head for weeks now, since this fight for Jack began. All I want for Christmas is IT for Jack. Shire, you have a chance to play Santa here. Christmas is one week away. I promise you, there is not a better gift anyone could give. You have a chance to be a hero. Do it!!


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