Meet Maddy
Taking DAYBUE since 2020
Maddy, age 21, living with Rett syndrome, with her sister
Maddy is the big sister of her family—headstrong, sassy, and wants to make decisions for herself and her treatment
Watch below to hear from Amy, Maddy’s mom, about the meaningful improvements in symptoms that Maddy’s family has seen since she started DAYBUE® in 2020.
For Maddy, some improvements include:
Maddy, age 21, living with Rett syndrome
For Maddy, some improvements include:
Hand movements or stereotypies
Maddy’s hands are less aggressive, and she has more control of them
Repetitive behaviors
Maddy hardly sticks her tongue out and grinds her teeth less
Breathing
Maddy’s breath holding has improved significantly
Nighttime behaviors
Maddy has fewer night terrors and laughing spells, allowing her to sleep better
Vocalizations
Maddy still has no words, but vocalizes more when someone talks to her or asks her questions
Facial expressions
Maddy’s face is calmer and more relaxed. She doesn’t grimace as much
Eye gaze
Maddy is able to make quicker choices with her eyes (such as choosing what she wants to wear)
Mood
Maddy has experienced less anxiety in crowds and is happier
Maddy’s story
Diagnosis and symptoms
Maddy was diagnosed with Rett syndrome at age 3—just a few years after the discovery of the MECP2 gene. Some of her signs and symptoms have included:
Loss of purposeful hand use
Breath holding
Loss of communication abilities
Waking up in the middle of the night with laughing spells or night terrors
Other treatments
Maddy attends physical, occupational, speech, massage, and music therapy.
Managing side effects
Maddy has had some reflux and vomiting with DAYBUE. Maddy’s parents told her doctor the first time it happened, and together, they developed a plan to help manage vomiting. With this plan in place, her parents have felt this side effect has been manageable for Maddy.
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. Maddy was a DAYBUE clinical study participant and continued to take DAYBUE. Maddy’s experience on treatment is unique to her. See the results from the clinical study. Maddy’s family was compensated for sharing their story and participating in a photo shoot. This story was created in March 2024.
DAYBUE has been a really important tool in our toolbox to help symptoms of Rett syndrome. We continue treatment because we continue to see a difference in Maddy.
— Amy, Maddy’s mom
