Meet Ellie
Taking DAYBUE since 2020
Ellie, age 16, living
with Rett syndrome
Ellie is just like any other teen—she loves music, especially boy bands, and gives a great teenage “eye roll”
Since being on DAYBUE®, Ellie’s family has noticed several meaningful improvements in the signs and symptoms of her Rett syndrome. Watch the video below to hear from Heidi, Ellie’s mom, on their experience with DAYBUE.
For Ellie, some improvements include:
Ellie, age 16, living with Rett syndrome
For Ellie, some improvements include:
Hand movements or stereotypies
Ellie’s hands are calmer and more controlled. She can hold her fork, put food in her mouth, and can now point to what she wants
Vocalization
Ellie is making more vowel sounds and trying to get more words out to express her feelings, needs, and wants
Eye gaze
She makes more choices with her eyes now. Because her eye gaze has improved, her family can understand her wants, needs, and wishes
Mood
Ellie’s mood has improved. She seems happier, she smiles more, and gives us big belly laughs when she thinks something is funny. And she laughs at TV shows at the right time
Facial expressions
At physical therapy, her mom asked for a kiss and she leaned in and kissed her on the face
Ellie’s story
Diagnosis and symptoms
Ellie received her Rett syndrome diagnosis at age 7. Some of her signs and symptoms have included:
Failure to reach developmental milestones
Loss of communication abilities
Repetitive hand movements
Other treatments
Ellie has been on different therapies since she was 2 years old, including speech therapy and yoga. Since her Rett syndrome diagnosis, she’s participated in occupational, horse, swim, massage, music, and regular physical therapy.
Managing side effects
Initially after starting DAYBUE, Ellie had some changes in her bowel movements, including diarrhea a couple times. She has experienced gas pains, and her doctor prescribed additional medication to help. Ellie’s family works closely with her doctor about any changes or side effects they notice.
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. Ellie was a DAYBUE clinical study participant and continued to take DAYBUE. Ellie’s experience on treatment is unique to her. See the results from the clinical study. Ellie’s family was compensated for sharing their story and participating in a photo shoot. This story was created in March 2024.
It’s worth talking to your doctor to see if DAYBUE is right for your child. If we didn’t try, then we wouldn’t know how it would benefit Ellie.
— Heidi, Ellie’s mom
