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Lucy Revealed

Lucy smiling and looking at camera.

Lucy enjoying free time

Lucy, a 14-year-old living with Rett syndrome, and her parents, Matthew and Anna, share their journey.  It is a story of joy and hope, of strength and dedication, but mostly, it is a story of love.

Matthew and Anna have worked tirelessly to surround Lucy with an enriched environment that includes a community of educators, therapists, and others who share their commitment to helping Lucy “be the best Lucy she can be.” Their resolve has taken Lucy to high school, mountain climbing, skiing, and horseback riding—experiences any child might have.

Discover more about Lucy from her parents, Anna and Matthew

Life With Lucy

Lucy’s Rett diagnosis wasn’t obvious at first. Watch as Anna and Matthew, Lucy’s parents, describe Lucy’s journey to her diagnosis, and the impact it had on their family of five.


Find out what led Matthew and Anna to Lucy’s diagnosis of Rett syndrome.

Impact of Diagnosis

Hear from Anna and Matthew, Lucy’s parents, as they talk about how their two oldest sons adjusted to life after the Rett diagnosis.

Advice for Newly Diagnosed

Watch Anna and Matthew, Lucy’s parents, as they give advice to other parents navigating a new Rett syndrome diagnosis.

Lucy smiling, eyes closed, in front of a butterfly mural.

Lucy enjoying art

Lucy on a horse being led down an outside path with her therapists.

Lucy at hippotherapy

Lucy surrounded by her family outside the Louvre in Paris. One of her brothers is kissing her cheek.

Lucy with her family in Paris

Lucy and her family pose for a picture on the ski slopes.

Lucy enjoying a ski day with her family

Lucy on a boat, smiling and putting her hand in her mouth, in between her parents. A boat driver is smiling in background.

Lucy exploring with her parents, Anna and Matthew

Every time we see her do things like this, our world has opened up at what’s possible. We don’t know what comes next…but her spirit is limitless.

Matthew, Lucy’s Dad

A colorful mosaic of the Rett community’s experience with Rett syndrome, created by eye gaze artist, Emily Shifflet.

Explore the Rett Revealed mosaic