You have a chance to help disabled kids, for free

Imagine that a baby girl is born, beautiful and healthy. She grows, thrives, learns, develops, and then one day it is all taken away and replaced with inconsolable crying. Months go by and she is now unable to walk, crawl, feed herself, flip through her board books and the words that she had are now gone. Then seizures set in, growth failure, scoliosis, breathing problems, and GI disturbances. What happened? Rett Syndrome.

My daughter, Sara, and I live in Lyman, SC. Sara was born in Greenville and seemed perfectly healthy. We soon discovered that Sara and thousands more children, have Rett Syndrome. My daughter has never been able talk, walk, crawl, stand, sit on her own, she has seizures, severe scoliosis, bad reflux and a feeding tube because she chokes on her food. She went into septic shock and cardiac arrest for five minutes back in April. Thankfully, God and the doctors at Greenville Memorial Children's Hospital brought her back to us. Despite all her issues Sara is always happy, laughing, smiling and giving hugs and kisses. She tries so hard to talk to us. She enjoys school and being around people. She loves music and care bears.

There is no cure for her condition, but in 2007 scientists found a way to reverse Rett in mice. Mice who were near death were within a few days, healthy and running around. We need your help. There is a contest by Pepsi going on. The top two charities will win $250,000! The Pioneer Fund in Denver has announced that If Rett wins the Pepsi contest they will also donate $250,000, for a total of $500,000 going to research! Rett Syndrome Research is also finding new info on other conditions, such as Bi-polar, Schizophrenia, Parkinson's and Alzheimer's. Rett Syndrome is the first and only neuro-developmental condition that is close to a cure. We NEED to do this. We CAN do this. With your help.


How can YOU help?
You have a free, easy and quick way to help thousands of sick and disabled people. Simply go to the Pepsi contest website, log in and vote everyday in July. I promise you will not get emails from Pepsi. Pass the link onto other people around Greenville,Spartanburg and beyond and ask them to vote as well. You can even copy this letter and pass it along or post it for others to see. My daughter almost died from complications of Rett Syndrome in April. Please help Sara and all the other little girls and women like her. Thank you.

Vote Here: http://www.refresheverything.com/search/?q=rett

Since The Surgery

Sara is now off her IV antibiotics and the PICC line is gone. She has been happy and smiley since her surgery and been in a good mood considering all she went through. She is still in a little pain every once in awhile, and she does not like to sit up at all anymore. Her doctor says since she only has the one rod in, that it is taking a lot of pressure when she sits up and that's probably what is bothering her. He said she could start mild PT again and excused her from school for the rest of the year. With the Veptr, you have to have surgery about every six months to lengthen the rod a little to accommodate for growth. It is supposed to be a simple procedure. He wants to do the next surgery in April so she can get that other rod back in and hopefully help her be more comfortable sitting up. He doesn't want her in school so she hopefully won't get sick before surgery and won't be in pain sitting up. So for now, we are taking it all a day at a time. I'm sad she can't go back to school yet because she loves school. I feel bad because she seems so bored here at home,except when her brother is talking to her and running around being silly.

Someone said they wondered if the surgery was worth it, since she got infection and is out of school and still in a little pain. I've wondered myself if it was worth it. I think it was. If she had not had the surgery, her left lung would be squished, probably collapsed and her be left with one lung. That could be fatal for her should she catch pneumonia or bronchitis. So the surgery was better than doing nothing. She is still with us. Smiling, laughing, loving. :)