Meet Caitlin
Taking DAYBUE® since 2023
Caitlin, age 25, living
with Rett syndrome, with her parents
Caitlin stays active with regular outings—like trips to the aquarium and the zoo—and loves being out and about as much as possible
Since starting DAYBUE, Caitlin’s family has seen meaningful
improvements in the signs and symptoms of Rett syndrome.
For Caitlin, some improvements include:
Caitlin, age 25, living with Rett syndrome
For Caitlin, some improvements include:
Vocalization
Caitlin's vocalizations are more purposeful
Facial expressions
Her facial expressions have increased. She looks at people when they are talking to her and smiles more
Hand movements or stereotypies
Her hands have been more relaxed, and she has more control over them
Breathing
She holds her breath less often. Before DAYBUE, she was holding her breath on and off throughout the day
Eye gaze
She makes eye contact consistently and indicates she’s listening to people by looking at them
Mood
Caitlin appears happier and has been laughing more with us
Caitlin's story
Diagnosis and symptoms
Caitlin was diagnosed with Rett syndrome at age 3. Some of her signs and symptoms have included:
Inability to talk and walk
Lack of control over hands
Holding of breath has been one of her most severe symptoms
Other treatments
Caitlin attends physical therapy as well as aquatic
therapy.
Managing side effects
To manage vomiting and diarrhea Caitlin experienced
early on, her doctor lowered her dose and increased it
to the full weight–based dose over the course of a year.
The main goal of DAYBUE treatment is to get back to the recommended dose. The amount of medicine given is based on your loved one’s weight and their doctor’s advice.
Important Note: The effectiveness and safety of DAYBUE were evaluated in the 12-week LAVENDER™ clinical study of 187 female patients aged 5 to 20 with Rett syndrome. Because each individual with Rett syndrome is unique—with a unique set of symptoms—the response to DAYBUE may be different for everyone. Caitlin initiated treatment on DAYBUE in August 2023 and was not a clinical study participant. Caitlin's experience on treatment is unique to her. See the results from the clinical study. Caitlin's family was compensated for sharing their story and participating in a photo shoot. This story was created in April 2026.
Caitlin has always made sounds but usually only when something was wrong. Since starting DAYBUE, her vocalizations are more purposeful. When someone walks into the room, she makes the same sound each time, like she’s greeting them. One day she even said “no,” and that was the first word she’s ever said.
— Gina, Caitlin's mom
