Thursday, March 27, 2014

Justice For Justina

Recently I learned of a teenaged girl who is in the middle of a custody battle.  The battle is not between her parents but between Boston's Children's Hospital and her parents.  Justina and her family live in CT.  She was diagnosed at Tuffs University Hospital with a rare genetic syndrome.  Justina's parents took her to Boston Children's Hospital for treatment.  In February of 2013 DCF of Mass took custody of Justina.  .  Justina's parents took her to Boston Children's Hospital for treatment. Instead doctors there over ruled Tuff's diagnosis and diagnosed Justina with a psychiatric disorder.  She was locked up in the psychiatric unit in spite of the fact that she was there to be treated for this genetic disorder.

This tuesday, the judge awarded permanent custody to DCF of Mass.  In his four page decision, Judge Johnson faulted the CT's child protective agency for it's failure to get involved. He wrote that Justina's parents of having haphazard decision making regarding their daughter's care.

How would you react if your 15 year old daughter was diagnosed with a rare genetic syndrome?  You would seek treatment.  That is exactly what Justina's parents did when going to Boston's Children's Hospital.  How would you feel if your daughter was diagnosed as having a psychiatric illness rather than a physical illness?  As someone with CRPS, I have heard over and over again that my CRPS is all in my head or there is no such thing as CRPS.  I was angry.

If my teen had a rare illness and was then told that her symptoms were made up; I too would be furious.  How would you feel of your child was taken from you and given to DCF and locked in a psych unit getting no medical treatment? How would you feel if your daughter went a year without a court appointment advocate (Gardian ad Litem or GAL)?  I know that I would be furious.  I would do everything in my power to fight to get my daughter back to Tuffs and get treatment for her medical condition.  This is exactly what Justina's parents are doing.

How can you help?

Learn more about this case,html

Go to

Sign a petition:

I can not understand why DCF of Mass sees it as their duty to take custody of Justina when her home state Conn and Tuffs University Hospital do not see this situation as child abuse.  What gives Mass the right to limit contact between Justina and her parents.  To have supervised visits fearing that her parents would discuss things that DCF deems inappropriate.

Help Justina get the medical treatment that she needs and has been suspended for over 13 months. Get involved.  This could just as well be your teenaged child.

Thank you Sue Pinkham for bringing this to my attention.  As a former pediatric nurse and as a GAL in FL; this situation infuriates me.  We all need to help Justina get the treatment that she needs and reunite her with her parents.


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    1. I know of a few CRPS physicians. Most of us have to travel.

      If you have insurance that will pay for infusions then:
      Freedom Pain Hospital in AZ
      Dr DuBruin in CA
      Drexel (long waiting list) in PA
      Dr North in NC
      Dr Bacon in TX

      No insurance these are the least expensive:
      Drexel In PA
      Dr Chopra in RI
      Florida Spine Institute FL
      Dr Kirkpatrick in FL
      Dr Prager CA
      Fox Chase in PA

      I hope this helps. I don't recommend one practice over another as we all get along differently with different doctors