A Silent Voice That Can Be Heard

I read an article about a girl named Hilary. At her second year of age she developed an unusual hand movements constant rhythm of her hands back and forth to her mouth. She would do this mostly non stop. She, also, developed some breathing abnormalities. For instance, she would sometimes hold her breath until her lips turned purple and hyperventilating. These were some symptoms of seizures. So her mom tried seizure medication but this didn’t help. Rather, it made it worse. From there, they decided to open up to other treatments. Nothing provided a diagnosis, much less a cure. At last their mystery was solved. When she was 5 a friend of the mom had read an article of a syndrome called the Rett Syndrome, or RS. She noticed that Hilary experienced some of the syndromes. So the friend sent the article to Hilary’s mom. After that, they went to see a different neurologist. One who had experience in the field. In the 90s researchers found that this was a genetic disorder. Since it was identified mainly in girls. RS has to be identified mostly by the symptoms. And Hilary had most of them. She had Rett Syndrome. RS occurs in 1 out of 10,000 or 15,000 girls. Yet, there was no known cure nor any specific treatment for it. The fundamental handicap in RS is called the apraxia. The Rett Syndrome Handbook defines it as such: “ Apraxia is the inability to coordinate thought or movement. It is the most fundamental handicap seen in RS, and involves all body movements, including speech and eye gaze. While the Rett Syndrome girl does not loose the ability to move the body, she looses the ability to tell the body how and when to move. She may have the desire and the will to move, but is incapable of carrying the movement through .” Hilary lost her ability to speak and walk. The symptoms of Rett Syndrome are as such:
Decreasing head growth from 4 months to 5 years of age.
Loss of the ability to use hands functionally.
Loss of the ability to speak.
Repetitive hand movement, such as clapping tapping or wringing. Individuals with RS, often move their hands in a characteristic “washing” motion and/ or repeatedly put their hands into their mouths.
If the child is able to walk, movements is stiff, with the legs wide apart. As the child gets older, moving and walking may become very difficult.
Unusual breathing patterns: either holding the breath or over breathing.
Seizures affect the behavior and movements. The seizures themselves aren’t usually harmful.
Scoliosis, a curvature of the spine, may cause the child to lean to either side or toward the front.
Some girls frequently grind their teeth.
Foot size is small, and poor circulation may make the feet very cold and or swollen.
Girls are usually small for their age in both height and weight. They may also be irritable and have trouble sleeping, have difficulty swallowing, and/or tremble and shame when upset or scared.
Recently it was discovered that it is a gene that switches off the gene that they are no longer needed. Hilary is now 20 years old and she is totally depended on others to feed her, cloth her, bathe her and change her diapers. She weights only 100 pounds. Her mother and her sister found hope, and look forward to God’s Kingdom arrangement. Where the “tongue of the speechless one will cry out in gladness” (Isaiah 35:6).