Medicaid has denied our request to send Landon to Boston. We believe they were given some misinformation by a nurse that didn't know what she was talking about and they based their decision on that information. We are requesting an immediate appeal of their decision. Every doctor involved in Landon's case here in NC and in Boston is contacting Medicaid to voice their opinion that Landon needs to be in Boston to begin the process towards a transplant and to get him on Omegaven to preserve his liver. We find it very hard to understand how medicaid could deny this request. We believe that Landon's liver is being damaged more and more every day that we are delayed from taking him to Boston. Landon's only hope is for a small intestine transplant. We are trying to preserve his liver so that he does not have to have a liver transplant as well. Most children in Landon's condition die from liver failure before they ever get to a transplant.
We are digging in our heals and have just begun to fight. I have been contacted by a law firm that will handle any legal matters for Landon. If we need to mount a legal battle then we will do that. I have other ideas but will save them until the appropriate time, if needed.
We have some very good doctors, nurses, and social workers working on this matter. I believe we will prevail but for now we are all very disappointed.
Please continue to pray for Landon.
EJ
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All: Prayers continue. Keep in mind that federal bureaucracies have no conscience. Unfortunately, they do not always properly differentiate needs from wants. Keep up the fight for what is right. Bring your plight to the attention of Rep. Foxx if necessary. Prayers continue. -Scott
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