Meet Nicole
Taking DAYBUE since 2023
Nicole, age 29, living
with Rett syndrome,
with her sisters
Nicole is a sports-loving social butterfly who’s inspired her sisters’ career paths
Nicole’s family has seen meaningful improvements in the signs and symptoms of Rett syndrome since starting DAYBUE®.
For Nicole, some improvements include:
Nicole, age 29, living with Rett syndrome
For Nicole, some improvements include:
Hand movements or stereotypies
Nicole’s hands are more relaxed, open, and she has more control of her hand movements
Vocalizations
Nicole has been vocalizing more to express different emotions, wants, and needs
Facial expressions
Nicole makes distinct facial expressions in response to conversations with her family
Eye gaze
Nicole looks at people when they talk to her and is able to maintain eye contact with them for longer periods of time
Mood
Nicole smiles more, and she is happier and excited to start her day
Nicole’s story
Diagnosis and symptoms
Nicole was diagnosed with Rett syndrome when she was around 10 months old. Some of her signs and symptoms have included:
Hand movements and wringing
Repetitive behaviors
Breath holding
Other treatments
From age 3 to age 21, she attended a school designed for special education, and she used to attend physical, occupational, and speech therapy. Currently, she goes to an adult day program and physical medicine and rehabilitation. She also wears dynamic ankle-foot orthosis.
Managing side effects
When Nicole started DAYBUE, she experienced diarrhea a few times. Before starting treatment with DAYBUE, Nicole’s family talked with their doctor about the potential for side effects and created a plan to help manage them. Nicole’s family adjusted her diet to include probiotics and fermented foods.
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. Nicole initiated treatment on DAYBUE in May 2023 and was not a clinical study participant. Nicole’s experience on DAYBUE was unique to her. See the results from the clinical study. Nicole’s family was compensated for sharing their story and participating in a photo shoot. This story was created in June 2024.
Even if your child is older, they can still benefit from DAYBUE. I know from experience that change can be scary, but it can also be good.
— Clare, Nicole’s mom
