FAMILIES
Living with Rett
Living with Rett syndrome is a unique journey, and every stage brings new experiences and challenges. With an unwavering commitment, we are here to help you meet the demands of life with Rett—today and tomorrow.

Supporting You Every Step of the Way
Navigating Rett syndrome is a lifelong journey, and we’re here to walk alongside you every step of the way. Whether you’re celebrating milestones or facing challenges, our Family Empowerment team can provide guidance, resources, and understanding. Please consider us your partner in ensuring your child’s needs are met and supporting your family throughout this journey.
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Rett Syndrome & Life Stages
Every stage of life with Rett syndrome brings its own milestones, challenges, and opportunities for growth. Compiled by our family empowerment team of parents and caregivers of loved ones with Rett syndrome, this section offers insights into what to expect as your child grows, along with resources and guidance to support your family through each stage of the journey.
Disclaimer: All information on this page is intended for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek their advice with any questions you may have regarding your child’s care.
Birth to 6 Years
Most babies with Rett syndrome will be born without complications and experience what seems like a typical infancy. However, you may notice missed or delayed milestones in areas like crawling, walking, or talking, as early as 6 months to 2 years of age. This is called regression. Loss of acquired skills like speaking, playing purposefully, or feeding themselves may also become apparent.
During this time, you might also begin to observe unusual movements or shaking upon waking, disrupted sleep, inconsolable crying, unexplained laughing, or teeth grinding. Other potential signs include eye issues like amblyopia (lazy eye) or strabismus (eyes pointing in different directions), weight loss, disordered breathing, or seizures. You may start hearing terms like hypotonia (low muscle tone), developmental delay, or short stature from your pediatrician.
Most children are clinically diagnosed with Rett syndrome by age 3 or 4, with genetic testing often confirming the diagnosis. Because Rett syndrome is rare, your doctor may not suspect it at first, and once you are diagnosed, you may be the first case they have ever seen. Remember, you are your child’s champion, and you may have to educate not only yourself but also your friends, family, and care team on Rett syndrome.
- Loss of speech
- Loss of purposeful hand use
- Involuntary hand movements such as handwashing
- Loss of mobility or gait disturbances
- Decreased muscle tone
- Seizures or Rett “episodes”
- GI issues like reflux and constipation
- Breathing and sleep disturbances
- Slowed growth in head, feet, and hands
Newly Diagnosed
Get started with essential resources to help you understand what to expect and make informed decisions for your child’s care and future.
Understanding Rett Syndrome
Learn the basics of Rett syndrome, including its causes, symptoms, and how it affects individuals and their families.
Managing Rett Care
Get the tools to help you navigate the complexities of Rett care effectively. The best care plan isn’t one-size-fits-all.
Find a Rett Clinic
Locate specialized Rett syndrome clinics dedicated to providing comprehensive care for individuals with Rett syndrome.
Comprehensive Care Guidelines
Share this resource with your medical team to support a meaningful partnership with those involved in the care of your loved one.
My Rett Ally
Sign up for this free web app that helps you simplify, organize, and share your child’s most important medical and care information all in one safe place.
6 to 12 Years
Between ages 6 and 12, many children with Rett syndrome begin to re-engage socially, showing increased joy and connection with family and peers. Communication and motor skills may improve with adaptive tools and intensive therapies. During this stage, gastrointestinal and orthopedic issues, such as scoliosis, may emerge.
While the pace of regression slows and some challenges may seem to stabilize, others—like seizures, movement difficulties, and anxiety—can become more pronounced. Frequent pneumonias may also occur due to an increased risk of aspiration. Behavior modifications or interventions for anxiety may help support your child’s emotional and physical well-being during this time.
Communication in Rett Syndrome
Find more information on the resources available for anyone seeking to better communicate with your loved one.
RettEd Video Library
earn more about common medical concerns in Rett syndrome, including seizures, puberty, and more, by searching our Playlist on YouTube.
Rett Education Programs
- Explore events designed to connect and empower your family with the knowledge you need to navigate every stage of your journey.
12 to 18 Years
Between ages 12 and 18, many children with Rett syndrome develop a more predictable personality, interests, and attention span. This is a typical time for puberty and adolescence, and scoliosis (an abnormal curvature of the spine) may progress, sometimes requiring bracing or surgery. Families often begin planning for transitions to middle school, high school, and adulthood, while also considering conversations about conservatorship and guardianship.
During this stage, families may hear more about contractures, hypertonia, or low bone density. Maintaining mobility and range of motion through physical therapy, along with access to communication devices, proper positioning, and modifications for activities of daily living (ADLs), are key goals. Prioritizing AAC (augmentative and alternative communication), assistive technology, durable medical equipment, and home modifications ensures safety, comfort, and access to the community, while communication, socialization, learning, and development remain central to your child’s educational plan.
Rett Research Ready
Learn more about the research and clinical trial process, and how you can play a vital role in paving the way for new treatments and cures.
Adult Transition of Care Toolkit
Use this tool to guide healthcare providers through the conversations necessary to transition your loved one to adult medical care.
ActiveRett
Check out ActiveRett, an online resource to help families, carers, therapists, and teachers support people with Rett syndrome to live more physically active lives.
Adulthood
Adulthood with Rett syndrome often brings a sense of stability and calm. With your support, your loved one can explore opportunities like community-based education, job training, or even alternative housing. You may notice some changes, like fewer seizures or hand movements. Still, it’s also important to stay mindful of health concerns such as gallbladder issues, unexplained pain, depression, or a higher risk of pneumonia.
Transitioning from pediatric to adult care is a significant milestone, and securing guardianship or conservatorship can help ensure their needs are met. Many adults with Rett syndrome live well into adulthood, and staying active with therapies can help maintain mobility and prevent stiffness.
Your role in their journey continues to be vital. Regularly reassess communication tools to ensure they meet your loved one’s needs and plan ahead for the future with trusts, wills, and considerations for aging caregivers. Routine health and dental check-ups remain essential to their overall wellness. Through all these changes, remember you’re not alone, and we’re here to help guide you every step of the way.
Get Involved
Learn how to fundraise, raise awareness, or advocate to help drive progress and create hope for the Rett community.
Events Calendar
Stay connected by participating in local and national events that support families just like you.
Harvard Brain Tissue Resource Center
Planning for the passing of your loved one can be difficult. Learn how organ donation will contribute to the hope of finding treatments and a cure.
Find Expert Care
Finding the right care for your child with Rett syndrome can make a world of difference. IRSF-designated Centers of Excellence are specially designated clinics that bring together expert teams who understand the unique challenges of Rett syndrome. These clinics provide comprehensive, coordinated care to support your child’s health and well-being while helping you navigate the complexities of their needs with confidence.

IRSF’s Rett Resource Hub
Be a champion for Rett syndrome.
Make a meaningful impact by supporting Rett syndrome awareness, funding critical research, and empowering families and individuals in the Rett community. Your involvement strengthens our collective effort toward better treatments and a brighter future for all those affected by Rett syndrome.