Girl born with no bones improving with new treatment - WSMV Channel 4

Girl born with no bones improving with new treatment

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NASHVILLE, TN (WSMV) -

The outlook is dramatically improving for a 6-year-old Nashville girl who was born with no bones in her body, as her rare medical condition called for an even rarer treatment.

Janelly Martinez-Amador was born with a rare illness that doctors believed was unsurvivable, but the use of a new drug and treatment has put hope back into the prognosis.

"It would be a death sentence. We had a child here a decade ago with this - a very sweet little boy. We tried every approach we could to help him build bones to manage this disease. He slowly deteriorated and we lost him," said Dr. Bill Russell, with Vanderbilt Children's Hospital.

Now, a new drug and experimental treatment at Vanderbilt's Children's Hospital has changed everything. For the first time in her life, something critical showed up on Janelly's x-ray.

"She's got bones now. She's not yet walking, but she can roll herself over. She can lay with her hands - things that kids can do at a much earlier age than 6, but she's making it clear she wants to catch up," Russell said.

Her survival is no longer in question. Instead, doctors are focusing on the quality of the life she'll lead.

"Only time will tell how much into the normal activity range she'll get," Russell said.

Dr. Jill Simmons at Vanderbilt Children's Hospital and a team of physicians and nurses have played a key role in treating Janelly.

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