Ashley's Story

She will leave fingerprints all over your heart


What do I do...

Just received a message that our transplant team will NOT be able to help us get Omegaven for Ashley Kate. I'm not sure what this means, "let her know that we will not be able to supply or help the patient receive Omegaven." It would be nice if the surgeon would speak to me and let me know what happened, where he left it, if the grant was applied for? denied? What the FDA said? if they were even contacted? I'm so upset I'm shaking. I guess we start all over at the ground level and try another team from another part of the country. The most disappointing part to me is that its in our transplant hospital and its being denied one of their own patients.

News Flash...My daughter's primary illness at this current time is this: LIVER FAILURE DUE TO TPN INDUCED CHOLEOSTASIS. If that doesn't qualify for immediate action then I'm not sure what does.

If Ashley Kate is to ever have an opportunity to receive another transplant she must first survive long enough to make it to transplant. If we can't turn this liver disease around (and the only thing we know of with the ability to do that is Omegaven) then she dies. I'm not willing to accept that fate without even trying. I'm just not.

I will be e-mailing Dr. Puder at Boston Childrens this afternoon. It disguists me that this is available to some and not to others. I don't even know what to do.


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