February 16, 2023 Patient Story

What Eye-Gaze Artist Emily and Her Parents Want You To Know About Living With Rett

If a picture is worth a thousand words, then Emily Shifflet is speaking loud and clear. Emily, an eye-gaze artist, lives her life from a wheelchair and is non-verbal, which is often the reality for people living with Rett syndrome.

This rare, debilitating, neurodevelopmental disorder occurs mostly in females in the first two years of life after apparent normal development, making the role of the caregiver extremely important for those living with Rett. Emily and her caregiving mother, Jenny, want you to know that when it comes to living with Rett syndrome, there is so much more than meets the eye.

Misconceptions About Rett

If you aren’t familiar with Rett, you may not know all the things those like Emily living with this condition are capable of offering to the world, despite the challenges they face. Hear from Jenny to understand more about how Rett doesn’t stop Emily from pursuing her interests.

Words from Jenny

Life with Rett syndrome is not an easy journey, but with support for those impacted by this condition, “we are not alone.” Jenny explains what it means to her and Emily – and all the families in the Rett community – to have others come “into the fold.”

Finding Purpose

When Emily was first introduced to eye-gaze graphic design software, her therapist thought it would help strengthen her eyes, but it did so much more. Jenny discusses how becoming an eye-gaze artist gave Emily purpose.

About Emily

Understanding that Rett is a physical condition, not an intellectual one, inspires a deeper appreciation of those living with Rett – like Emily, who wants to express herself in a way others will understand.

Emily’s Activities

Emily doesn’t let Rett syndrome stop her from pursuing her passions. From ice skating and wheelchair yoga to cheerleading and watching hockey, hear Jenny describe the favorite hobbies and activities of her vibrant daughter.

Inside everyone is a special ability.

Jenny, speaking about her daughter Emily and all those impacted by Rett syndrome