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Friday, December 6, 2013

Justina still held by Boston Children's Hospital

Another court date in 5 days, still hope she can be home with her family for Christmas. 5 more days of declining health..



What really gets me about this story? It doesn't matter who your Dr is.. Doesn't matter how connected you think they are, Doesn't matter if you have all the faith in the world in your Mito Specialist, this could happen to your family too.


It just takes 1 Dr(nurse) for this nightmare to happen to you too.


Your diagnosis, your team of Specialists- mean NOTHING to many other Drs., to Hospitals. It seems as though the rest of world of Medicine doesn't think your Mito is real, to the point they won't recognize a genetic diagnosis.. shocking and alarming. It makes us even wonder,is Mito real? Even though we see findings on a report, when we are questioned often and watch Drs. disregard that it exists, it makes the patients question the validity of their disease.


I am more grateful then ever that Abby hasn't needed or could not tolerate any of the Mito treatments.


The thought of needing the ER, even one where the Mito Specialist has rights, makes me cringe. No patient is safe.


How can this happen here in the US? Why are our Mito Specialists ignored by CPS, by the courts? How can a genetically proven disease be ignored?


Even worse? The majority of Mito patients don't even have a gene identified- if they can do this to Justina and reports indicated she has been genetically diagnosed, what about the majority of children with Mito who have no gene identified?


Hoping that a 5 day turn around for the next court date indicates that Justina is on her way home.

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