Rett Syndrome Care in Grand Rapids, Michigan

Rett syndrome is a rare, severe neurological condition that almost always affects females and impacts nearly all body movements. In Grand Rapids and across West Michigan, families affected by Rett syndrome can access specialized care through major health systems including Spectrum Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health, as well as local public health resources.

This guide explains Rett syndrome in clear terms and highlights resources available in Grand Rapids, MI.

What Is Rett Syndrome?

Rett syndrome is a disorder of the nervous system that affects how the brain develops and functions. It typically appears in early childhood after a period of seemingly normal development.

Common features include:

  • Loss of purposeful hand use (such as grasping, holding, or self-feeding)
  • Loss of spoken language or difficulty learning to speak
  • Problems with walking or loss of the ability to walk
  • Repetitive hand movements (for example, hand wringing, clapping, tapping, or hand washing–like motions)
  • Difficulties with coordination, balance, and overall movement

Girls with Rett syndrome usually need ongoing:

  • Physical therapy
  • Occupational therapy
  • Speech and communication therapy
  • Medical and developmental follow-up with pediatric neurologists and other specialists

In Grand Rapids, many of these services are available through pediatric neurology and rehabilitation programs at Spectrum Health Helen DeVos Children’s Hospital and other local pediatric specialty clinics.

What Causes Rett Syndrome?

Rett syndrome is most often caused by a change (mutation) in a gene called MECP2, which plays a key role in how brain cells (neurons) function and communicate.

Key points about the cause:

  • The MECP2 gene change disrupts normal brain development and function.
  • In most cases, there is no family history of Rett syndrome.
  • The genetic change usually arises randomly in one child and is not inherited from the parents.
  • Very rarely, Rett syndrome can be inherited in families.

Because Rett syndrome is genetic, families in Grand Rapids are often referred to genetics clinics or genetic counselors through local health systems or regional genetics services in Michigan.

Types of Rett Syndrome

There are two broad forms:

Typical (Classic) Rett Syndrome

A diagnosis of typical Rett syndrome usually requires:

  • A clear period of regression (loss of previously acquired skills) during the first 5 years of life, followed by a period of partial recovery or stabilization.
  • Partial or complete loss of purposeful hand skills, such as grasping and self-feeding.
  • Partial or complete loss of spoken language.
  • Repetitive hand movements, such as hand wringing, squeezing, clapping, tapping, mouthing the hands, or hand washing/rubbing movements.
  • Abnormal walking (gait), such as an unsteady walk or inability to walk.

Atypical (Variant) Rett Syndrome

A diagnosis of atypical Rett syndrome requires:

  • A period of regression within the first 5 years of life, followed by recovery or stabilization.
  • At least two of the four main criteria used for typical Rett syndrome (loss of hand skills, loss of speech, repetitive hand movements, abnormal gait).

Other features that can support an atypical diagnosis include:

  • Scoliosis (curvature of the spine) or kyphosis (forward rounding of the back)
  • Breathing disturbances while awake
  • Inappropriate laughing or screaming spells
  • Teeth grinding (bruxism) while awake
  • Diminished response to pain
  • Sleep disturbances
  • Intense eye communication (“eye pointing”)
  • Abnormal muscle tone (too stiff or too floppy)
  • Growth delay
  • Small hands and feet
  • Cold or bluish hands or feet (circulation issues)

Children in Grand Rapids who show these signs are often evaluated by pediatric neurologists, developmental pediatricians, and genetic specialists at local hospitals.

How Is Rett Syndrome Diagnosed?

Clinical Evaluation

Diagnosis is based first on a careful clinical evaluation, which may include:

  • Detailed medical and developmental history
  • Physical and neurological examination
  • Observation of hand use, communication, and walking
  • Review of any periods of regression in skills

Doctors in Grand Rapids may work as part of a multidisciplinary team including:

  • Pediatric neurologists
  • Developmental pediatricians
  • Physical, occupational, and speech therapists
  • Genetic counselors

Genetic Testing for MECP2

A genetic test can identify changes in the MECP2 gene that are associated with Rett syndrome.

Important points:

  • A positive MECP2 test supports the diagnosis but does not confirm it by itself, because MECP2 changes can be seen in other conditions.
  • A child can have Rett-like symptoms without a detectable MECP2 change.
  • The diagnosis is a combination of clinical features and genetic testing.

Genetic testing and counseling services for families in Grand Rapids can be accessed through:

  • Spectrum Health and Trinity Health Grand Rapids genetics clinics
  • Regional clinical genetics services in Michigan
  • Referrals from your child’s pediatrician or neurologist

Stages of Rett Syndrome

Rett syndrome typically progresses through four stages:

Stage 1 – Early Onset

  • Age: Usually 6 to 18 months
  • Features:
    • Development slows
    • Milestones (like sitting, crawling, or first words) may be delayed or not met
    • Subtle changes in eye contact, interest in play, or hand use

Stage 2 – Rapid Destructive (Regression) Phase

  • Age: Usually 1 to 4 years
  • Features:
    • Loss of acquired skills, including:
      • Purposeful hand use
      • Speech and language
      • Walking or coordination
    • Onset of repetitive hand movements
    • Possible breathing irregularities and sleep problems
    • Increased irritability or crying

Stage 3 – Plateau Stage

  • Age: Begins between about 5 and 25 years and can last for many years
  • Features:
    • Abilities stabilize; some children may show slight improvement in attention and communication (especially through eye gaze)
    • Seizures may appear or continue
    • Breathing and movement issues may persist but may be less intense

Stage 4 – Late Motor Deterioration

  • Age: Usually adolescence or adulthood
  • Features:
    • Progressive loss of movement
    • Reduced mobility, muscle weakness, and joint stiffness
    • Increased risk of scoliosis and other orthopedic issues
    • Communication abilities through eye gaze often remain

Not all individuals experience every stage in the same way, and the timing can vary.

Treatment and Therapies for Rett Syndrome in Grand Rapids

There is no cure for Rett syndrome yet, but early and ongoing treatment can improve quality of life and help slow the loss of movement and function.

Common therapies include:

Physiotherapy (Physical Therapy)

  • Helps prevent joint deformities and contractures
  • Supports strength, balance, and mobility
  • Addresses posture and scoliosis risk
  • Particularly important during Michigan’s long, cold winters when outdoor activity may be limited

Occupational Therapy

  • Focuses on improving or maintaining hand use and daily living skills
  • Adapts activities and environments for safety and independence
  • Recommends specialized equipment, seating, and positioning

Speech and Communication Therapy

  • Supports nonverbal communication methods
  • Helps develop effective ways to express needs, choices, and emotions
  • Works closely with families and schools to integrate communication tools

Other Helpful Therapies

  • Hydrotherapy (exercise in water) – often beneficial for movement and relaxation, especially in indoor pools during West Michigan winters
  • Horseback riding (hippotherapy) – can improve balance, posture, and muscle tone
  • Music therapy – can support engagement, mood, and communication
  • Environmental enrichment activities – age- and developmentally appropriate toys, sensory play, and structured routines

Many of these services are available through:

  • Spectrum Health Helen DeVos Children’s Hospital rehabilitation programs
  • Trinity Health Grand Rapids and Metro Health rehabilitation services
  • Private pediatric therapy clinics in the Grand Rapids area

Drug Trials and Research

Clinical trials for Rett syndrome medications, including drugs like Anavex 2-73, have been underway in the United States and internationally.

Key points:

  • Drug trials aim to improve symptoms and quality of life, but these treatments are still being studied.
  • Participation is usually through specialized research centers and requires careful screening.
  • Families in Grand Rapids interested in trials can:
    • Ask their child’s neurologist about current Rett syndrome research
    • Check national clinical trial registries
    • Connect with national Rett syndrome organizations for updates

Communication With a Child Who Has Rett Syndrome

Children with Rett syndrome often have a strong desire to communicate, even if they cannot use speech.

Effective communication methods can include:

  • Touch – responding to gentle touch, hugs, and physical closeness
  • Pictures and letters – picture boards or symbol cards
  • Word boards – boards with words, phrases, or symbols the child can point to
  • Eye gaze systems – computer-related devices such as:
    • Eye-gaze communication systems (e.g., devices similar to My Tobii)
    • Tablets (like iPads) with specialized communication apps
  • Switch-operated voice output devices – buttons or switches that produce recorded or synthesized speech when activated

Speech-language pathologists in Grand Rapids can help families choose and learn to use the best communication tools for their child.

Education for a Child With Rett Syndrome in Grand Rapids

Most children with Rett syndrome benefit from individualized educational plans and specialized support.

Educational options may include:

  • Specialist schools or classrooms with intensive support
  • Mainstream (general education) schools with additional services
  • A combination of specialist and mainstream settings, depending on the child’s needs

Children with Rett syndrome usually need:

  • A school environment that provides strong motivation and engagement
  • Early exposure to toys, music, and interactive activities
  • Age- and developmentally appropriate learning experiences
  • Collaboration between teachers, therapists, and families

Families in Grand Rapids can work with their local school district and special education services to develop an Individualized Education Program (IEP) that supports communication, mobility, and learning.

Genetic Counseling and Rett Syndrome in Grand Rapids

If your child has been diagnosed with Rett syndrome, speaking with a genetic counselor can be very helpful.

Genetic counselors:

  • Are trained in both genetics and counseling
  • Provide clear information about:
    • What causes Rett syndrome
    • How it is inherited
    • The chances of Rett syndrome occurring in future pregnancies
  • Offer emotional support and guidance
  • Help you understand what the diagnosis means for your child’s health and development

In Grand Rapids, genetic counseling may be available through:

  • Spectrum Health and Trinity Health Grand Rapids genetics departments
  • Referrals from your pediatrician, neurologist, or primary care provider

Genetic counselors are sensitive to family circumstances, culture, and beliefs, and can connect you with additional resources in Michigan and nationwide.

Support for Families Living With Rett Syndrome in Grand Rapids, MI

Living with Rett syndrome affects the whole family. Support networks can make a significant difference.

Local and Statewide Resources

  • Kent County Health Department
    Offers information on developmental services, disability resources, and public health programs in the Grand Rapids area.

  • Grand Rapids Public Health and local community organizations
    May provide referrals to therapy services, respite care, and family support programs.

  • Genetic Support Network of Michigan (GSNM)
    Connects families affected by genetic conditions across Michigan, including West Michigan. They can:

    • Link you with other families facing similar challenges
    • Provide information on support groups and events
    • Help you navigate healthcare and educational systems

National and Condition-Specific Resources

  • Rett Syndrome Association of the United States
    Provides:
    • Educational materials about Rett syndrome
    • Updates on research and clinical trials
    • Online and in-person support groups
    • Family conferences and gatherings

These organizations often work together and can help families in Grand Rapids find both local and national support.

Living With Rett Syndrome in West Michigan

Families in Grand Rapids face some unique considerations:

  • Cold winters and icy conditions can make mobility and transportation more challenging for children with movement difficulties. Adaptive equipment, safe home modifications, and accessible transportation are important.
  • Seasonal changes may affect:
    • Sleep patterns
    • Outdoor activity levels
    • Risk of respiratory infections, which can be more serious in children with neurological conditions
  • Access to major health systems (Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health) and specialty pediatric care in Grand Rapids is a significant advantage for ongoing management.

With coordinated medical care, therapy, educational support, and strong family and community networks, many individuals with Rett syndrome in Grand Rapids can enjoy meaningful relationships and activities throughout childhood and adulthood.

If you live in the Grand Rapids, MI area and suspect your child may have Rett syndrome, or if you have received a recent diagnosis, speak with your pediatrician or a pediatric neurologist and ask for referrals to:

  • A genetics clinic and genetic counselor
  • Physical, occupational, and speech therapy services
  • Local and statewide support organizations in Michigan

Early evaluation and support can make a real difference in your child’s quality of life.