Risky treatment moves Windsor Locks woman toward normal life

Risky treatment moves Windsor Locks woman toward normal life


By Matthew Engelhardt
Journal Inquirer
Published: Monday, June 16, 2008 11:17 AM EDT

WINDSOR LOCKS — James Remotti was never so happy to get kicked in the rear end as he was back in April.

When he realized who delivered the “well-deserved” strike — after turning to see his sister Mary, 19, smiling and laughing in her wheelchair — he was overjoyed.

This was much more than just normal brother-sister shenanigans. The kick was a sign that Mary was getting better and the sister James remembered was back to her old self.

“I can move my legs again,” Mary said last week, demonstrating her newfound dexterity as she swung her feet back and forth.

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The improvement in Mary’s condition, Reflex Sympathetic Dystrophy Syndrome, has been a blessing for her and the Remotti family.

She was diagnosed with the rare affliction in 2005 after enduring countless tests and misdiagnoses.

RSD was causing her nerves to misfire and interpret anything that touched her as pain, even the sensations created by clothing or drops of water against her skin.

Mary persevered through the initial diagnosis, even though none of her treatments was relieving her pain. She managed to graduate from Windsor Locks High School, but her condition worsened to the point where she was bedridden in her family’s living room.

Blankets caused her pain, so to keep her warm, Mary’s family would drape linens from pipes attached to the bed.

Every day, Mary risked spasms and other complications that could have led to a hospital stay or worse.

Treatment induced coma

There was only one hope left for Mary: a controversial treatment using ketamine, a powerful anesthetic used in humans and animals.

The treatment is used in extreme cases of RSD. Patients are put into a coma with ketamine to essentially reboot their brains. After coming out of the coma and enduring months of rehabilitation, patients reported that their pain had subsided and their lives could get back to normal.

However, compassionate use of ketamine is illegal in the United States. Its psychedelic side effects make it a popular recreational drug known as “Special K.”

Mary went to Florida to see an RSD specialist, who introduced the Remottis to the idea of undergoing the coma treatment in Mexico, where it is legal.

The prospect gave the family hope, but they were working both against the disease’s spread over Mary’s body and the large price tag of the treatment.

The family established Mary’s Wish, a Web site that helped them inform the public of Mary’s battle and solicit donations to cover the approximate $200,000 needed for the treatment and rehabilitation. Through dinners, a car raffle, and an outpouring of community support, the Remottis raised enough to at least get Mary to Mexico and undergo the treatment.

The Web site and stories publicizing Mary’s story had another effect. Other patients and families struggling through RSD were finding inspiration in her battle.

“They used Mary as their light,” James Remotti said. “A lot of the same things that helped her are helping them.”

Relief not immediate

Mary arrived in Monterey, Mexico, in early January, and it was almost too late to save her. Her internal organs had started to fail and she could no longer move.

“By the time we left” for Mexico, “I couldn’t move my mouth any more,” she said.

Doctors induced the coma, and Mary stayed under for five days. She awoke bewildered as well as scared because she didn’t feel the instant relief for which she had prayed.

Over time, she improved. The pain dissipated, and though there were a few setbacks requiring “ketamine boosters,” Mary began to distinguish the RSD pain from the injuries caused by years of being bedridden.

By February, she was allowed to leave the hospital bed. Just as importantly, she could fulfill a wish she had all along: her family could hug her and hold her hand without it causing her pain.

“It’s a relief, a miracle, an answer to all the prayers offered for her,” Margaret Remotti, Mary’s mother, said. “The biggest thing is seeing the big smiles on her face and hearing her say that it doesn’t hurt.”

By April, Mary was allowed to return home to Windsor Locks, where she can once again care for herself, feed her pets, clean up her room, and, yes, fight with her siblings.

“I can wear clothes again,” Mary said. “No more tent bed.”

‘It doesn’t hurt!’

After years in bed, her muscles had atrophied, and now she is slowly building the strength to stand. She gets into the pool twice a week and can put weight on her right leg and hop around a bit.

Mary is not completely healed and her family says that there is no complete cure for RSD. Still, each day that goes by, she gets a little stronger and closer to accomplishing other long-term goals, such as getting certified as an emergency medical technician and pursuing a college degree.

“The first time she went back out into the rain, she was so excited,” Margaret Remotti said. “She yelled, ‘it doesn’t hurt! It doesn’t hurt!”

Mary said her family and friends have been wonderful with their support and that those that haven’t seen her in a while are shocked and amazed to see her improvement.

“I don’t have that fear of ‘what if somebody touches me?’ Mary said.

There are still plenty of medical bills to pay. The family continues to organize events to help foot the costs and is selling Mary’s Wish T-shirts to help.

Moreover, James said, he hopes to establish Mary’s Wish as a nonprofit to help others with RSD.

For more information or to read about Mary’s experience in her own words, visit

www.maryswish.com

Click Here For The Original Article Online.

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