Lincoln Girl Stays Silent to Raise Awareness for Sisters Disorde - KHGI-TV/KWNB-TV/KHGI-CD-Grand Island, Kearney, Hastings

Lincoln Girl Stays Silent to Raise Awareness for Sister's Rare Disorder

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Bailey and Emma Larson Bailey and Emma Larson

For 8-year-old Emma Larson of Lincoln, every day is a struggle. When she was just a toddler, her parents noticed something wasn't quite right.

"Emma developed normally until she was about 18 months to 2 years old, and then her speech didn't really start like we'd expect it to," Emma's dad, David Larson, said. "Emma could feed herself Cheerios and start to use a spoon, and she gradually lost all that. She had some words, and she lost those, too. It's kind of tough because you have a kid who seems like everything's great and then it just starts to fade away."

Doctors originally diagnosed Emma with autism, but at the age of 4, genetic testing revealed that she actually had Rett Syndrome -- an extremely rare neurological disorder that almost exclusively occurs in girls.

"We did some intense therapy to try and help improve her autism, and she didn't improve," David Larson said, "So the people we were working with suggested that maybe she had Rett Syndrome."

One in 10,000 girls get Rett Syndrome, and those suffering from the illness often lose their ability to talk and use their hands -- as is the case with Emma.

"Her mind knows what she wants to do, but she can't get her body to perform the tasks," David Larson said. "So talking -- you've got to coordinate lots of things -- breathing and the mouth-moving...We use a system of 'yes' or 'nos,' where you have to pretty much ask her all the questions you think she might be thinking, and she'll give you a 'yes' or 'no' answer by tipping her head."

That's why Emma's big sister, 10-year-old Bailey Larson -- a fifth-grader at Eastridge Elementary School -- has set out to be the voice her little sister doesn't have. She decided to not talk for 24 hours, to see what life is like in Emma's shoes.

"Bailey is the type of student that every principal is excited to have in their school," Deb Dabbert, Eastridge Elementary School principal, said. "She's such an advocate for her sister, and she sees this as being a very important cause, and would want to do anything to help her...You only realize the importance when you watch her interact with her sister, to see the love and encouragement and support she gives to Emma every day."

And that sisterly love pours out when Bailey talks about Emma.

"Emma and I like to dance, and sometimes I get to feed her a little bit, and we snuggle a lot of the times -- she loves that," Bailey said.

And even though Emma can't tell her big sister what it means to her, Bailey says she already knows.  

"I think it really meant a lot to her -- even if she can't communicate it -- because I definitely know that she knows that I'm her big sister and I will do anything for her," she said. "I love her more than anything. She means everything."

David and Terri Larson are the Nebraska regional representatives for the International Rett Syndrome Foundation. You can find more information about Rett Syndrome and the foundation at www.rettsyndrome.org/.

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