Meet Shannon
Taking DAYBUE since 2024
Shannon is an easygoing woman who loves music, horses, and being in the water.
Shannon's mom and the people in her group home have noticed positive changes since she started DAYBUE® in 2024.
For Shannon, some improvements include:
Shannon, age 54, living with Rett syndrome
Hand movements or stereotypies
Her hands are calmer with less wringing. During equine therapy, she can now press buttons on the saddle to signal the horse
Repetitive behaviors
She used to grind her teeth constantly, to the point of damaging her teeth. She now grinds them less, and her mom hardly ever notices
Breathing
Shannon's breath holding has improved. She still does it, but not nearly as often
Facial expressions
Her facial expressions have increased. She didn't used to smile; she would just stare off
Eye gaze
She used to never make eye contact. Now she makes eye contact when her name is called and uses her gaze to choose between items she wants
Mood
Shannon laughs at appropriate times. Before, she would laugh randomly. Now she is laughing at something happening
Shannon's story
Diagnosis and symptoms
Shannon was diagnosed with Rett syndrome at age 12, and had genetic testing in her 40s. Some of her signs and symptoms have included:
Teeth grinding
Loss of communication abilities
Difficulty swallowing
Decision to start DAYBUE with an adult patient
Shannon's mom was hesitant to try DAYBUE at first. Concerned about possible side effects, she was worried they might be hard for her group home to manage. Shannon’s family and care team weighed potential benefits of DAYBUE against the possible side effects and came up with a plan to move forward with treatment. They felt that even in her 50’s, Shannon deserved every chance she could get to improve. Age alone shouldn't be the reason not to try something that might help her. They didn't want to look back and wonder if it might have helped.
Other treatments
Shannon has managed her seizures with different medications over the years. She attends equine therapy weekly, which she loves. As she's gotten older, her care plan also includes monitoring her bone health, adjusting food textures to ensure she can swallow safely, and encouraging her to walk more.
Managing side effects
When Shannon started DAYBUE, she was still on her constipation medication and experienced some diarrhea at first. After she stopped taking her constipation medication, the diarrhea stopped.
Caregiver perspective
When Shannon started DAYBUE, her mom didn't think they would see a lot of changes since she's older and has been living with Rett syndrome for so long. But so far, they've noticed changes that, while small, feel big to them. Shannon's mood is more relaxed overall, and her mom feels like she's getting more of her. While starting something new can feel like a lot, Shannon's family felt that if DAYBUE had any chance of helping her at all, she deserved that opportunity.
Before starting treatment with DAYBUE, talk to your loved one's doctor about stopping any laxatives they may be taking.
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. Shannon's experience on treatment is unique to her. See the results from the clinical study. Shannon's family was compensated for sharing their story and participating in a photo shoot. This story was created in November 2025.
There's always been a bond between mother and child, but for a time, especially in her 30s and 40s, it felt distant, almost "blah." Now, with her improved mood and smiles, my heart smiles along with hers.
— Martha, Shannon’s mom
