Meet Henry
Taking DAYBUE since 2023
Henry, age 5, living
with Rett syndrome
Henry is a social boy who loves soccer, music, and giving kisses
Since starting DAYBUE®, Henry’s family has seen meaningful improvements in the signs and symptoms of Rett syndrome.
For Henry, some improvements include:
Henry, age 5, living with Rett syndrome
For Henry, some improvements include:
Hand movements or stereotypies
Henry has more intentional hand movement and can hold a weighted spoon with assistance
Repetitive behaviors
Henry grinds his teeth and taps his fingers less
Vocalizations
Henry has a greater variety of vocalizations, especially when he wants something. When he sees a soccer ball, he says, “ba ba ba”
Eye gaze
Henry has been able to use his eyes to make progress with his eye-gaze device to communicate
Mood
Henry is less anxious, calmer, and yells less. He can sit calmly at story time and restaurants
Henry’s story
Diagnosis and symptoms
Henry was diagnosed with Rett syndrome when he was almost 2 years old. Some of his signs and symptoms have included:
Failure to reach developmental milestones
Repetitive hand movements and behaviors
Loss of communication skills
Bursts of anxiety and irritability
Tremor
Other treatments
Henry has a comprehensive treatment plan developed by his neurologist. It includes physical and occupational therapy 5 times a week at the school he attends for children with complex needs. He also uses an eye-gaze communication device.
Managing side effects
For the first few weeks after starting DAYBUE, Henry experienced diarrhea. Then, with guidance from their doctor, Henry’s family decided to take a wait-and-see approach while adjusting his diet to include more bananas. Henry’s diarrhea is managed with the help of their doctor.
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. Henry initiated treatment on DAYBUE in July 2023 and was not a clinical study participant. Henry’s experience on treatment is unique to him. See the results from the clinical study. Henry’s family was compensated for sharing their story and participating in a photo shoot. This story was created in August 2024.
Before DAYBUE, Henry used to have bursts of irritability. Since starting DAYBUE, Henry’s mood has improved. He’s less anxious, and his first line of defense isn’t to yell. We feel more confident taking him out to restaurants.
— Carrie, Henry’s mom
