Tellico Plains toddler battles rare developmental disease

Tellico Plains toddler battles rare developmental disease

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Carly Teague with her parents Josh and Sally. Carly Teague with her parents Josh and Sally.
"Usually they start regressing with their speech first. So they develop normally at first, start talking like a normal kid would, and then go backwards," said Carly's pediatrician, Dr. Marc Courts of Loudon Pediatric Clinic. "Usually they start regressing with their speech first. So they develop normally at first, start talking like a normal kid would, and then go backwards," said Carly's pediatrician, Dr. Marc Courts of Loudon Pediatric Clinic.

By LORI TUCKER
6 News Anchor

TELLICO PLAINS (WATE) - On Tuesday night, a Tellico Plains toddler was at Johns Hopkins Hospital in Baltimore, beginning her part in a clinical trial that her parents hope will ease symptoms of a rare disorder.

Rett Syndrome works backwards, you might say.

A child may be born looking and acting perfectly healthy. But in a few months or a few years, parents start to notice something's not quite right.

Their child who once could walk and talk is now only crawling and not speaking at all.

Two-year-old Carly Teague is a sweet, happy little girl who gets a kick out of digging into a container of dried beans.

It's more than a toy. It's a form of physical therapy, helping Carly with motor skills that have weakened as Rett Syndrome takes hold.

Carly's parents knew early on that she wasn't developing like other kids her age.

"She didn't start talking, and she didn't crawl at all," said Carly's dad, Josh Teague.

"We thought that possibly she was autistic when we took her to her doctor's appointment," Sally Teague, Carly's mom, said.

Carly was diagnosed with the developmental disorder that affects mainly girls in one out of up to 23,000 babies worldwide. It's the result of a gene mutation.

"Usually they start regressing with their speech first. So they develop normally at first, start talking like a normal kid would, and then go backwards," said Carly's pediatrician, Dr. Marc Courts of Loudon Pediatric Clinic.

One of the characteristics of the disorder is hand wringing. Carly has just started that.

The hope is new medication through the Johns Hopkins clinical trial will help ease that and other symptoms.

"It's not a miracle trial where these kids are reversed and are perfect, but what it possibly can do is slow down some of this development decrease, and if they already kind of went backwards a little bit, to bring back some of the skills that they had," said Sally.

The Teagues are exploring every resource to help not just their daughter, but other children like her.

They recently held an event called "Carly's Climb to Reverse Rett," and thanks to Facebook and word of mouth in Tellico Plains, hundreds came out and raised $18,000 for the International Rett Syndrome Foundation's research efforts.

"We were blown away," Sally said.

The family is hoping there will one day be treatment to turn the symptoms around.

In the meantime, they welcome any improvement, no matter how small.

"We hope, we just hope that even if she could just communicate, just to be able to talk or walk even just a little bit, that would be enough for us," Sally said.

Research is underway in other countries on actually reversing Rett Syndrome through the use of stem cells.

The clinical trial Carly is taking part in lasts for three months. It's a controlled study.

The family doesn't know if Carly's getting medication or a placebo.

For more information on Rett's syndrome and how you can help with donations for research, visit the International Rett Syndrome Foundation website.

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