Meet Holly
Taking DAYBUE since 2023
Holly, age 11, living with
Rett syndrome, with
her parents
Holly is an active girl who loves traveling and being silly—especially with friends and family
Holly’s family has seen what’s possible since starting DAYBUE®.
For Holly, some improvements include:
Holly, age 11, living with Rett syndrome
For Holly, some improvements include:
Hand movements or stereotypies
Holly can now pick out the chocolate and macadamia nuts from her trail mix
Breathing
Holly doesn’t hold her breath as often and has been hyperventilating less
Mood
Holly’s mood has improved significantly. She is less anxious and more engaged in structured activities. She also participates more in school
Vocalizations
As noted by her teachers and principal, her improvements in communication have led to less frustration in class
Eye gaze
Holly’s eye gaze has always been good, but now she's able to focus more on other things, like watching sports or TV
Holly’s story
Diagnosis and symptoms
Holly was diagnosed with Rett syndrome when she was around 4 years old. Some of her signs and symptoms have included:
Loss of purposeful hand use
Breath holding
Loss of communication abilities
Other treatments
Holly attends physical therapy as well as occupational and speech therapy.
Managing side effects
Holly occasionally has diarrhea. Her parents have adjusted her diet to include bananas and sometimes add psyllium to her beverages.
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. Holly initiated treatment on DAYBUE in July 2023 and was not a clinical study participant. Holly’s experience on treatment is unique to her. See the results from the clinical study. Holly’s family was compensated for sharing their story and participating in a photo shoot. This story was created in June 2025.
We love seeing her surprise herself as she tries new things. Her mood has improved, and because of that, her frustration levels have gone down, and she seems happier.
— Kammy, Holly’s mom
