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Local student with Rett syndrome on Anderson Cooper’s show

Emma Dalton, a Saranac Lake High School student who has Rett syndrome, was featured on Anderson Cooper’s digital show Full Circle in March 2021. (Provided photo — Jen Dalton)

SARANAC LAKE — Last week, Emma Dalton and her mother Jen watched as Anderson Cooper told his audience about how Emma stays connected to her group of friends with Rett syndrome across the country using a variety of technologies.

Emma is 14 and has Rett syndrome, a rare neurological disorder that limits her motor skills and her ability to talk. But using eye-tracking and speech-generating technology she communicates fluently with friends, family and classmates at Saranac Lake High School.

Her story was featured on March 2 in a segment called “The Goods” on Cooper’s digital show Full Circle, in which viewers send positive stories from their lives.

“That’s amazing,” Cooper said, watching Emma with her friends Srinidhi Balaji, Lilia Munn and Emma Follis — who all have Rett syndrome and live across the country — gather for a Zoom Halloween party in costume.

“She was giddy. She kept looking at me and smiling,” Jen said about watching the clip with Emma. “She’s just beaming.”

They watched the video over and over. Emma has not met with her “teen group” friends since the segment aired, but they will meet up again this Thursday to talk about their national news debut.

“I can tell from the moms that the girls are so excited,” Jen said.

Emma’s friends from Saranac Lake High School have been excitedly emailing her, saying they saw her on the show and Jen says her daughter has been getting “fan mail.”

Emma’s CNN appearance also earned her a new nickname from her favorite teaching assistant at school: “Primetime.”

On the air

In the clip Emma is seen in a Zoom call with three girls she calls every week, all of whom use eye-tracking and speech-generating technology to communicate.

“I think a lot times people just make assumptions that because someone communicates in a different way they can’t have meaningful communication and friendships,” Jen said. “These girls are smart, and they’re trapped in bodies that don’t work the same way that other children’s bodies work.

“She’s sassy, she’s funny,” Jen added. “She can be snarky just like a typical 14-year-old.”

Jen met Lilia Munn’s mother Vera Adamovich online while discussing a spinal correction surgery Emma was getting ready for.

“She was so interested in the surgeon’s technique, she flew from California to have the same procedure done on Lilia,” Jen wrote in a Facebook message.

While at the hospital in Long Island the moms became friends. Adamovich invited Emma to join a weekly “teen group” video call California-based Rett syndrome Communication Specialist Judy Lariviere organizes and hosts.

Emma became fast friends with the other girls. Now, Jen said she looks forward to seeing them every Thursday.

The girls call in from Saranac Lake, California and Missouri to read books and talk about them together, plan holiday parties and sometimes simply talk about their lives.

“Sometimes she’s so excited she’s crawling out of her skin to see her friends and talk about the same things that typical teenagers talk about,” Jen said. “Just these girls use their eyes.”

The computers they use have cameras to track their eyes. Using precise eye movements they can type, select words and create sentences, which are then generated in to audible speech.

Jen said large movements like standing up are hard for people with Rett syndrome. Emma has to think about each individual movement when standing up. Smaller motions can be done much faster.

Learning to speak using the device was not easy. Jen said Emma started around seven years ago, at an older age than usual, but has become proficient over the years.

However, there was a period last year when Emma wasn’t sure she would be able to continue communicating.

Insurance

Her current device is her second one. When the first one slowed down and eventually failed last year, buying a new one was difficult. This technology is expensive. The device she uses now, the Tobii Dynavox I-13, costs around $7,500 and the Dalton’s insurance company did not want to pay for it.

While they worked through the appeal and denial process Emma got a device on loan.

“We had to fight insurance for 18 months to get her new device,” Jen said.

Jen said insurance companies often do not cover devices kids will use in school, saying the districts should pay for them instead.

“This doesn’t happen,” she said. “If a school was to pay for a device then the device would have to stay in school, which totally defeats the purpose of someone being able to communicate 24/7. … It’s across the board so important for a better quality of life.”

Eventually, in September 2020, Medicaid covered the purchase.

Getting on the show

When Jen sent her daughter’s story to Cooper’s show she didn’t expect anything to come of it.

“They’re not going to pick this up,” she thought.

But in less than 24 hours she got a response back from producers at CNN.

“Oh my gosh, really?” she said.

Jen sent CNN information, photos and videos of Emma’s group but was still not certain it would air. Then, on March 2 at 4:30 p.m. she was told the segment would that night at 6 p.m.

“It was very cool for someone like Anderson Cooper to learn a little bit about Rett syndrome,” Jen said. “I respect him as a journalist. He puts a lot of humanistic nature into his stories. I think he cares about that.”

Cooper said the girls hope to one day meet up in person for a vacation together.

“That would be awesome,” Cooper said.

Jen said the COVID-19 pandemic has been easier for her family than others. She said for so many years Emma felt isolated, like many people are now as they avoid the virus. But through the same video calling technology everyone is now using to stay connected — along with some high-tech computers — she has found a group of friends to ride out the pandemic with.

“We’ve been fortunate enough that our districts have allowed us to teach and work from home,” Jen said.

Emma is in 9th grade at Saranac Lake High School. Jen teaches at Saranac Lake Middle School. Emma’s father Mark teaches in the Malone Central School District.

Participating in class virtually is easy for Emma, Jen said. She has really enjoyed it.

“You can look at Rett syndrome as something horrible, and for a lot of people it is something horrible,” Jen said. “For us, we’re some of the lucky ones. Emma’s doing amazing things.”

Emma’s segment on Full Circle can be viewed at https://cnn.it/2PIWwph.

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