The Eyes Have It! Woman With Rett Syndrome Paints Her Artistic Vision — Literally!

The eyes of an artist are special. They can see things others can’t and create beautiful art forms from their imagination. In the case of 27-year-old Emily Shifflet, she creates her art literally using only her eyes, as she lives with Rett Syndrome, a rare genetic neurological and developmental disorder that limits speech and movement.

But Emily doesn’t let her condition limit her creativity.

“Although Emily lives with a condition that has silenced her, she is still able to communicate and express herself through art, and she is an example that people living with Rett syndrome can have lives filled with purpose and creativity,” said Emily’s mother, Jenny Shifflet. 

Emily creates her art using a special digital software operated by her eyes called the Tobii EyeGaze Device. She was able to learn and hone her craft when her therapist installed the digital painter software on her communication device. 

“I love her cards,” said Meghan Winslow, owner of SPLAT, a family art studio. “I love the diversity (of) the different designs based upon the different paint tools that she can select. It’s amazing the intersection of the science and the technology and the arts.”

When Emily was 6 months old, her mother, Jenny, says they noticed she wasn’t hitting the developmental milestones required for that age. And by age 2 she had lost the milestones she already had. 

“Her ability to walk, talk, swallow safely, use her hands was gone, and was starting to have seizures,” Jenny said. “At age 3 we took her to Johns Hopkins Kennedy Krieger program and she was diagnosed based with symptoms of Rett Syndrome.”

Emily has always been exposed to music and art. The Tobii Device has really helped her communicate how she was feeling. The painting tool was truly a game-changer.

“Emily could finally use the only muscle she has to be creative,” Jenny said. “And she has been.”

Jenny noticed the art Emily was creating a few years ago and thought they could make nice Christmas gifts. She now sells her one-of-a-kind artwork through her website, Eye Gaze Designs by Emily.

“Her artwork is a gift,” Jenny said. “It is showing people that individuals with different abilities can create and be successful in different ways. That’s what we wanted to show.”

October is Rett Syndrome Awareness Month. Emily is partnering with a national art campaign called “Rett Revealed” that will feature her unique artwork and raise awareness about Rett Syndrome.

The Eye Gaze artist will create a photo mosaic for the campaign. Members of the community are encouraged to share their meaningful moments so they can be included in the mosaic.

Emily’s artwork has also appeared in Penn State Hershey Medical Center and The Arc of Pennsylvania. She also serves as a guest artist at Splat Family Art Studio in Annville and Hershey, Pennsylvania. She simply continues to shine.

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