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Health & Fitness

"Who Is Justina?"

THE JUSTINA PELLETIER STORY, PART I

On a wind-blown, Sunday afternoon, recently, I found myself at the end of a spread-out line of picketers, near the state DCF run Wayside Youth Facility, which is currently keeping vigilant guard over 15 yr. old Justina Pelletier from West Hartford, who found herself on Valentine’s Day, 2013 in the middle of a dispute over her medical diagnosis between two respected hospitals in MA – Tufts and Boston Children’s Hospital.  (Go to http://abcnews.go.com/Health/advocates-fight-teen-justin-pelletier-held-state-pysch/story?id=22312907 for ABC’s coverage from Feb. 10th to read the background of this case.)

 Justina Pelletier, the youngest of four sisters, had been treated for over a year by the Chief of Metabology, Dr. Korson, at Tufts for mitochondrial disorder, a condition in which cells and tissues in the body are deprived of sufficient energy from the cell’s mitochondria, resulting in a host of symptoms that can affect various organs throughout the body.  Justina’s older sister, Jessica, has also been successfully treated for the disorder, which can run in families.)

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“Who is Justina?” the young man poking his head out the car window asked, perplexed, as the car he was riding in slowed down as it passed the array of signs, placards and light blue balloons saying “Free Justina” along Rt. 9 near the Whole Foods lot in Framingham.  Others honked and waved, rolling down their windows to smile and give their thumbs up.


Unfortunately, too many passers-by, and personal friends have had the same response as the young man of asking "Who's Justina?"   I am creating this blog to chronicle the sad and scary story of what happened to Justina Pelletier, which, unfortunately, has happened to other families in the Commonwealth, and could happen to yours, if you have a vulnerable child.

Quick synopsis:  Imagine you have a child with a complicated medical history, in Justina's case, a childhood stroke, followed by a diagnosis of mitochondrial disorder.  You as a parent look around for the very best medical care in hopes of giving your daughter a normal life, and, by God's grace, you succeed.  The Pelletiers found Tufts, which has treated two of their four daughters.  According to a family friend who is also a nurse, while Justina had to interrupt her life a few days at a time for various medical procedures and treatments, she was always able to return home and get on with her life of enjoying family and friends, and pets, her school buddies, and was even able to perform in figure skating competitions.

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That all changed when the Pelletiers took Justina to Boston Children’s Hospital to see her formerly Tuft’s based gastroenterologist, Dr. Alejandro F. Flores.  Instead, not only did Children’s substitute a differing team of doctors, but declared that Justina had somatoform disorder, or psychologically induced symptoms.  They presented the Pelletiers with their game plan that would involve taking Justina off her current meds and treating her for psychological symptoms instead.  When the Pelletiers said, “I don’t think so” – and went to transfer their daughter back to her Tufts team, BCH prevented them from doing so by calling in a security team, and calling the MA-DCF, an organization that relies upon the expertise of Boston Children’s when medical issues arise.  DCF took custody of Justina, rubber stamping, in essence, the hospital’s accusation of “medical child abuse,” even though the Pelletiers have been able to document every procedure Justina has undergone in her treatment for Mito as doctor ordered and insurance approved.  Justina was first treated in the neurology department at Children’s, then moved to Bader 5, a locked down psych facility, where she remained for twelve months, before being moved to the Framingham facility.  Justina’s muscle tone deteriorated and her hairline has receded.  (See photo.)

The once happy teen has snuck notes to her parents, whose visitation privileges were reduced to one hour per week with social workers present, and has been videotaped, expressing her strong desire to return home.  A large network of online supporters has emerged and can be followed on Facebook at: “Free Justina from Boston Children’s  Hospital” A Miracle for Justina”, “Free Justina Now”, “Believe – Be Hope” (which archives articles), and on twitter @#FreeJustina and #FreeJustinaNow.

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