‘People need to hear me’
Emma Dalton, 16, is going into her junior year at Saranac Lake High School next month. Just like many of her classmates, Dalton is enjoying a summer free of schoolwork before she returns to school. Unlike her classmates, Dalton has Rett Syndrome.
Impacting one in 10,000 girls, Rett Syndrome is a rare disorder that limits communication and movement, and because of that, Dalton has to adapt her studies and her way of life. With her Eye Gaze Computer, she is able to communicate with her eyes to relay anything she wishes to say.
Despite certain setbacks, Dalton still has her own interests, hobbies and a desire to learn, just like many students her age. She is looking forward to heading back to school and is excited to see certain teachers — Caryl Stiles, Kathy Latour, Charlene Claremont and Kerry Munn — among others.
“I’m excited to see Caryl, she is the best of my team. She has been working hard with me … we are planning to prank a few men,” Dalton said.
Stiles worked with Dalton last year, and also helped her prank Kristops Miemis, a teacher at the high school, on multiple occasions.
Beyond pranking the teachers of Saranac Lake High School, Dalton has a wide variety of interests. Reading, music and movies are just a few of her hobbies. Currently, Dalton is reading “The Sisterhood of the Traveling Pants” with her three friends: Lilia, Emma and Srinidhi, all of whom also have Rett Syndrome. They live in different parts of the country but keep in touch virtually.
“Lilia, Emma and Shri are my BFFs. We talk every Saturday. We are going to text. I am so excited,” Dalton said.
Dalton’s mother, Jennifer Dalton, said the girls are referred to as the “Fabulous Four” and have grown very close.
“Each of the girls has a dream they are pursuing,” she said.
Emma’s dream is baking, and she has been working on a cookbook at school and wants to open a cookie shop once she has graduated high school. Often watching Dorie Greenspan, an American author of cookbooks and CBS TV personality, Emma credits her with her improved cookies.
In reference to her baking, Emma said: “It is so much fun! Cookies are my favorite to bake. I do not like to clean up. It is boring. It is for Mom.”
Beyond baking, Emma has multiple interests she wants to explore in her future.
“I would like to see horses. I love horse movies. My favorites are ‘Dreamer’ and ‘Secretariat,'” she said.
Travel is another of Emma’s interests. Not only does she want to visit the other members of the Fabulous Four, who live in California and Missouri, but she also wants to go to Italy, England, Greece and Boston.
“I will swim with dolphins with Lilia, Emma and Shri. I want to go to Disney World and swim in a warm pool,” she said.
In order to stay safe from COVID-19 this past school year, Emma was often pulled from school during case surges. But despite facing obstacles, she participated in an accomplishment for all with Rett Syndrome. Acadia Pharmaceuticals Inc. performed the Phase 3 Lavender study, which looked at girls with Rett Syndrome’s response to the drug Trofinetide compared to a placebo. As the mutation that causes Rett Syndrome occurs on the X chromosome, it is believed that males rarely live because the disorder is fully expressed in those with only one X chromosome versus the two that females have. Emma was one of the 187 girls evaluated to determine the safety of the drug, which showed “promising results” according to Jennifer Dalton.
“Emma is a trailblazer for taking part in this important research,” Jennifer said.
Emma is not only participating in life-changing research but also fighting to be heard. When discussing her Eye Gaze Computer, Emma spoke of people’s interactions with her.
“I am smart. I am funny. People do not understand. I am not stupid. Please wait. This is hard for me sometimes. I have something to say. My device helps me. People need to hear me,” she said.