Emily Hughes is a beautiful 3-year-old little girl who is suffering from Rett Syndrome. She was born on July 11, 2012 without any signs of this debilitating disease and developed like a normal child. However, after a year, she started showing some abnormalities; she was not able to say words, like "mommy and daddy" up to 1-year-old. Emily did not talk, she never learned to walk on her own, and she was not growing same as the children of her age grow. These were the symptoms of Rett syndrome which Emily showed.
Rett syndrome, which attacked Emily as well, is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. The real cause behind the Rett syndrome is the mutations on the X chromosome on a gene called MECP2. It is not a degenerative disorder. As seen in this little girl, Emily, Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function.
These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion. Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. That is what happened in Emily case as well; her pediatrician, thought for a long time that she was just behind in her development, and that everything would be "ok." However, as time went on, with the pediatrician’s continued observation they thought she may have something called Hypotonia, which is low muscle tone. So, Emily's parents, Matthew and Karli Hughes, decided to take her to Nemours Children's Hospital in Orlando to find out what was really wrong with her. They did not have a hint that their beloved daughter was suffering from Rett Syndrome! Later, in Orlando, Emily first saw Dr. Richard Finkle, M.D., Pediatric Neurologist. He referred Emily to Dr. Patricia Wheeler, M.D., specializing genetics to do some tests. Finally, they found the answer on August 11, 2015, when she was diagnosed with Rett Syndrome.
After the diagnosis, Emily’s family decided to take action to find a cure for Rett Syndrome, and fight this disease. They are actively working with the community to bring awareness about Rett Syndrome. If you would like to make life easier for Emily, and all children with this disease, then we need your help in fund raising or anything you can do to help support this cause.
To know more about Rett syndrome, go to https://www.rettsyndrome.org/document.doc?id=168
To get more information about the fund raiser, log on to http://www.rettsyndrome.org/golfforeacure
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Submitted by: Jamie White
Company: Jamie PR
Email: [email protected]
New York, USA
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