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Despite Protest, West Hartford Girl Still In Boston Hospital

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Another custody hearing and another disappointment for Lou and Linda Pelletier.

The West Hartford parents say their daughter Justina transformed from being able to ice skate to being in a wheelchair, all within the last nine months, while she has been in Boston Children’s Hospital.

“This can happen to anybody,” said Heather Harwood, one of several people who showed up to protest outside the courthouse at Justina’s latest custody hearing Thursday morning.

Some, like Harwood, drove from Connecticut, while othera drove 3 1/2 hours from Maine to support the family of Justina Pelletier.

Because of a gag order issued by the judge on Nov. 7, the Pelletiers can’t discuss the case anymore, but Harwood showed up to voice her support.

Holding signs calling it a “kangaroo court,” about 12 protesters stood just feet from the courthouse doors, explaining their cause to those who asked what was going on.

“It’s not right … what’s happening to the Pelletiers,” said Harwood.

She didn’t even know the family before seeing our Fox CT investigation last month that explained how Justina was diagnosed with mitochondrial disease three years ago, a condition causing muscle pain and weakness, and was then admitted to Boston Children’s Hospital in February 2013 with the flu.

But her parents say doctors there said Justina had somotoform disorder, not mitochondrial disease, essentially saying her pain was caused by a mental condition, not physical.

When her parents demanded a second opinion, they say they were escorted out by security, and within four days, a judge awarded custody to the Massachusetts Department of Children and Families.

Lou and Linda haven’t had custody since.

“The doctors think that they know better, and they just take our children from us, and I’m afraid to go to different doctors. I’m afraid to go to the ER. I’m afraid that this could happen to me, too,” said Harwood during the protest.

She says she’s afraid because two of her kids have mitochondrial disease.

But she isn’t the only parent who traveled hours to support the Pelletiers at the custody hearing.

“It’s a three-hour ride,” said Nancy Tozier, who make the trek from Maine to join the protest, which was largely prompted by human rights activist Kevin Hall’s investigation into the situation.

“We’re trying to shine a light on it so they can’t take away Justina so easily,” said Hall.

Internal documents Fox CT obtained from Boston Children’s Hospital reveal that the hospital called in DCF after Justina’s parents disagreed with the somatoform diagnosis, alleging abuse or neglect.

But medical paperwork from her previous hospital, Tufts Medical Center, where she was diagnosed with mitochondrial disease, show that every surgery and medication was sanctioned by doctors.

On Thursday afternoon, Boston Children’s Hospital emailed Fox CT this statement:

The Hospital is not the custodian or the legal guardian of the patients in its care, nor is it affiliated with any state agency.  Our staff are caring and supportive professionals who aim to provide the best and most appropriate care for each and every child, regardless of diagnosis.”

But internally, the hospital is saying something else.

Fox CT recently obtained an internal email sent from Boston Children’s CEO Sandra Fenwick to “all BCH employees, staff, and volunteers” that says:

“In regards to a story you may have seen in the media asserting that there is a custody issue with one of our patients … the information being reported is not accurate.”

But since we asked, the hospital has not responded specifically to our request to identify which part of the report is “not accurate.”

“Since Justina’s story has come out, people have been coming out of the woodwork with story after story about how their children are now locked in, and I think it’s given them a sense of security to be able to say, ‘Hey, you know what? I’m not the only one,’ ” said Massachusetts mother, Melissa Kerins at the protest.

Tozier spoke further.

“It’s a nightmare.  It’s a nightmare. Luckily my daughter was over 18 so I was able to say, ‘Get away from her now.’ ”

Tozier’s kids, who also have rare diseases, are safe at home, but if the Pelletiers can’t sway Judge Joseph Johnston by next week’s hearings, they could lose custody of Justina until she’s 18.

That’s a scenario that Heather hopes her new-found friends won’t have to endure.

“We’re all hoping that they let Justina go home and be with her family. … She needs to be home for Christmas. She’s already missed Thanksgiving, Mother’s Day, Easter. She’s missed her birthday. She needs to be home.”

The Pelletiers’ next court date is scheduled for Dec. 10 in Boston.

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