Home Forums my lil’ cousin w/ Rett Syndrome


I have a very very urgent prayer request. My little cousin, Bailey, was diagnosed with a rare syndrome called Retts syndrome. She is 3 years old. The syndrome mainly affects only females. The only cure for this disease is God. Below are some facts about Rett syndrome. please pray for her. Write her name down and put in your bible and when you are in the atmosphere of God’s Holy Spirit and His healing power, Bailey’s name will be there so her name will be lifted up to Jesus. I’m believing now more than ever for God to reach out and touch her. I don’t care about my own wants and needs right now, I just care about Bailey. My heart aches for her so much. Inside of me i’m

like “OH, GOD!” I ask God to hold her in His strong mighty arms and heal His child.

1. Rett syndrome is a childhood neurodevelopmental disorder

characterized by normal early development followed by loss of

purposeful use of the hands, distinctive hand movements, slowed

brain and head growth, gait(walking) abnormalities, seizures, and

mental retardation. It affects females almost exclusively.

2. The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child. Before the

symptoms begin, however, the child appears to grow and develop

normally. Then, gradually, mental and physical symptoms appear.

Hypotonia (loss of muscle tone) is usually the first symptom. As the syndrome progresses, the child loses purposeful use of her hands and the ability to speak. Other early symptoms may include problems crawling or walking and diminished eye contact. The loss of functional use of the hands is followed by compulsive hand movements such as wringing and washing. The onset of this period of regression is sometimes sudden.

Another symptom, apraxia — the inability to perform motor functions — is perhaps the most severely disabling feature of Rett syndrome, interfering with every body movement, including eye gaze and speech.

Individuals with Rett syndrome often exhibit autistic-like behaviors in the early stages. Other symptoms may include toe walking; sleep problems; wide-based gait (person’s manner of walking); teeth grinding and difficulty chewing; slowed growth; seizures; cognitive disabilities; and breathing difficulties while awake such as hyperventilation, apnea (breath holding), and air swallowing.

What are the stages of the disorder?

There are four stages of Rett syndrome. Stage I, called early onset, generally begins between 6 and 18 months of age. Quite frequently, this stage is overlooked because symptoms of the disorder may be somewhat vague, and parents and doctors may not notice the subtle slowing of development at first. The infant may begin to show less eye contact and have reduced interest in toys. There may be delays in gross motor skills such as sitting or crawling. Hand-wringing and decreasing head growth may occur, but not enough to draw attention. This stage usually lasts for a few months but can persist for more than a year.

Stage II, or the rapid destructive stage, usually begins between

ages 1 and 4 and may last for weeks or months. This stage may have either a rapid or a gradual onset as purposeful hand skills and spoken language are lost. The characteristic hand movements begin to emerge during this stage and often include wringing, washing, clapping, or tapping, as well as repeatedly moving the hands to the mouth. Hands are sometimes clasped behind the back or held at the sides, with random touching, grasping, and releasing. The movements persist while the child is awake but disappear during sleep. Breathing irregularities such as episodes of apnea and hyperventilation may occur, although breathing is usually normal during sleep. Some girls also display autistic-like symptoms such as of social interaction and communication. General irritability and sleep irregularities may be seen. Gait patterns are unsteady and initiating motor movements can be difficult. Slowing of head growth is usually noticed during this stage.

Stage III, also called the plateau or pseudo-stationary stage,

usually begins between ages 2 and 10 and can last for years.

Apraxia, motor problems, and seizures are prominent during this

stage. However, there may be improvement in behavior, with less

irritability, crying, and autistic-like features. An individual in stage III may show more interest in her surroundings, and her

alertness, attention span, and communication skills may improve.

Many girls remain in this stage for most of their lives.

The last stage, stage IV — called the late motor deterioration

stage — can last for years or decades and is characterized by

reduced mobility. Muscle weakness, rigidity (stiffness), spasticity, dystonia (increased muscle tone with abnormal posturing of extremity or trunk), and scoliosis (curvature of the spine) are other prominent features. Girls who were previously able to walk may stop walking. Generally, there is no decline in cognition, communication, or hand skills in stage IV. Repetitive hand movements may decrease, and eye gaze usually improves.

What is the outlook for those with Rett syndrome?

Despite the difficulties with symptoms, most individuals with Rett syndrome continue to live well into middle age and beyond. Because the disorder is rare, very little is known about long-term prognosis and life expectancy. While it is estimated that there are many middle-aged women (in their 40s and 50s) with the disorder, not enough women have been studied to make reliable estimates about life expectancy beyond age 40.

Please pray for her.

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