Meet Clare
Taking DAYBUE since 2021
Clare, age 9, living with Rett syndrome, with her mom
Clare is full of personality. She’s packed with lots of energy and lots of laughs
Hear from Allison, Clare’s mom, about the meaningful improvements in the signs and symptoms of her daughter’s Rett syndrome since being on DAYBUE®.
For Clare, some improvements include:
Clare, age 9, living with Rett syndrome
For Clare, some improvements include:
Hand movements or stereotypies
Clare’s hands are more fluid and open. She can even feed herself and hold her own ice cream cone
Nighttime behaviors
Clare has night terrors less often and is able to sleep better
Vocalizations
Clare is vocalizing more, and she is babbling more to let people know she wants something
Eye gaze
Clare’s eye gaze has improved, which allows her to connect better with her family and classmates
Mood
Clare is able to take an interest in what’s around her. She also is screaming less and has fewer tantrums
Clare’s story
Diagnosis and symptoms
Clare was diagnosed with Rett syndrome at age 4. Some of her signs and symptoms have included:
Difficulty controlling her hands—her mom says “her hands would get in the way of themselves”
Loss of communication abilities
Frequent screaming spells and night terrors
Other treatments
Clare attends occupational therapy, physical therapy, speech therapy, horse therapy, swim lessons, gymnastics classes; sees a physiatrist for muscle tone checks; wears shoe inserts; sees a gastroenterologist and nutritionist.
Managing side effects
After starting DAYBUE, Clare began experiencing behavioral outbursts and anger. She did not want to eat, didn’t sleep, and cried frequently. Clare’s parents worked with her doctor on how to manage these side effects. Clare’s dose was lowered, and her mood improved.
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. Clare was a DAYBUE clinical study participant and continued to take DAYBUE. Clare’s experience on treatment is unique to her. See the results from the clinical study. Clare’s family was compensated for sharing their story and participating in a photo shoot. This story was created in March 2024.
Clare has been on DAYBUE for more than four years now. Her experience hasn’t always been easy because of some side effects, but since starting DAYBUE, we’ve seen improvements in Clare’s Rett symptoms.
— Allison, Clare’s mom
