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Rett Syndrome

Rett Syndrome. My Silent Angel.

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Rett Syndrome

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  1. RettSyndrome My Silent Angel Rett syndrome was founded in 1998. Diagnoses before 98’ where thought to be what is now known as Autism. In 99’ I was blessed enough to have received my own silent angel! Her name is Kelsey Kay and she is currently 14 years old. Kelsey has improved and beat the odds of the symptoms Rett Syndrome can bring along with it. What is Rett Syndrome? The earliest symptoms A Neurological disorder • Slow head growth • Loss of muscle tone • Habitually rubs hands together that only affects females. Rett is caused by an X Chromosome deficiency How many does this affect? When do the seizures begin Retts affects At age of Only 1 in every 15,000girls. 7 A look at a silent angel Seizures begin • Seizures immensely increase through out age Treatment • Medications • Physical therapy • Speech therapy • Nutritional Support Life Span The girls lifespan depends On the severity of there Diagnoses. Severity of there Seizures contribute immensely to the amount of brain damage Mobility and Speaking decline Ability of skills in child without Retts Retts Child Skill Ability 10 9 8 7 6 5 4 3 2 1 International Rett Syndrome Foundation First 24 months 4-10 2-4 11-Death How can I get involved? *Copy and paste web address to visit the following websites; Join the IRSF (International Rett Syndrome Foundation)http://www.rettsyndrome.org Contribute to research donations https://www.rettsyndrome.org/make-a-difference/donate-now/donate Attend/support strollathons http://www.rettsyndrome.org/special-events/strollathon Take the “R” word pledge http://www.r-word.org International Rett Syndrome Foundations Core Mission The core mission of the IRSF is to fund research for treatments and a curefor Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services. My Silent Angel; Kelsey Kay Kelsey Kay has undergone speech, physical, horse, and water therapy. Not to mention the multiple Dr. appointments and all of the treatment she has undergone. However, she is still diagnosed as a Rett child. Knowing Rett Syndrome has no cure, my family and I have accommodated. We’ve have made it our obligation to push Kelsey Kay to work as hard as possible to achieve small goals. Kelsey is now able to walk a consecutive 23 steps and can repeat the words “Bird” and “Baby.” Kelsey's seizure medicine has finally been decreased, showing her body is fighting! These steps are very small but knowing Kelsey is improving is all the matters. Please help spread Rett Syndrome awareness! Awareness will allow research to increase and will hopefully end with a cure for this syndrome. References: • http://www.rettsyndrome.org/about-irsf mission#sthash.HwlfkOm7.dpuf • http://www.rettsyndrome.org/special-events/strollathon • http://www.r-word.org • http://www.webmd.com/brain/autism/rett-syndrome • http://www.ninds.nih.gov/disorders/rett/detail_rett.htm

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