Meet Kate
Taking DAYBUE since 2021
Kate, age 9, living with Rett syndrome
Kate loves music and being active. Her mom says if they keep her moving, she’s happy!
Kate’s family has seen meaningful improvements in the signs and symptoms of Rett syndrome since she started DAYBUE® in 2021.
For Kate, some improvements include:
Kate, age 9, living with Rett syndrome
For Kate, some improvements include:
Hand movements or stereotypies
Kate is able to use a spoon and point at and touch her tablet
Eye gaze
Kate is better able to use her eye-gaze device to convey her wishes and needs
Mood
Her parents describe her as more peaceful—at home, at school, and in groups
Kate’s story
Diagnosis and symptoms
Kate was diagnosed with Rett syndrome at age 3. Some of her signs and symptoms have included:
Repetitive hand behaviors
Loss of purposeful hand use
Loss of communication abilities
Other treatments
No daily medications to manage symptoms; attends occupational therapy to strengthen hand function, as well as speech and physical therapy.
Managing side effects
Shortly after starting DAYBUE, Kate started having diarrhea. While it doesn’t happen every day, when it does occur, it can require multiple diaper changes and can happen multiple times a day. This was a different experience for her family, as Kate struggled with constipation before the trial and sometimes had to take laxatives. When the diarrhea first started, Kate’s parents worked with their healthcare team to come up with strategies for managing the diarrhea. In consultation with her healthcare team, Kate’s parents stopped giving her laxatives and instead started an antidiarrheal every day, which has helped make her bowel movements more solid.
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. Kate was a DAYBUE clinical study participant and continued to take DAYBUE. Kate’s experience on treatment is unique to her. See the results from the clinical study. Kate’s family was compensated for sharing their story and participating in a photo shoot. This story was created in March 2024.
She’ll use her eye-gaze [device] and maybe navigate to a page, and then once she’s there, she’ll make her choices with her hand.
— Jen, Kate’s mom
