Sara turns 10

Sara turned 10 years old December 21st. She had a great party with lots of friends and family and she was spoiled completely rotten. I can't believe our baby is 10 years old now! It seems like just yesterday, I was holding her newborn self in my arms, oohing and aahing over her fair skin, blue eyes, pink lips and dark hair. We are so blessed to have had ten years of pure love and joy with her and am praying for many more years. She is such a sweet girl, always happy, smiling, laughing and giving kisses. Here lately she has been making lots of sounds trying to talk and I love it! She is so amazing and such a blessing. Can't imagine life without her. So many girls with Rett have passed this past year it is heartbreaking. It makes me sad and angry. Sad for their families, and angry that this crazy Rett monster even exists. So, I try to snuggle and spoil and love my Sara as much as possible. Can't resist her smile!

Raffle Prizes & Silent Auction Items for Celebrate Sara

Prizes:
‎2 Spa Gift Certificates worth $50 each
2 Gift Certificates for Moe's worth $10 each
5 Gift Certs for a free Photo Session worth $100 each
1 Gift Certificate for Dobson's Gift Shop worth $15
1 Bath & Bodyworks gift set
1 Avon gift basket
1 Gift Card for Kohl's worth $25
1 Gift Card for Barnes and Noble worth $25
1 Gift Card for Barnes and Noble worth $40
1 100 minute Phone Card
1 holiday wreath
1 Handmade rug
Matted Photos from a Local Photographer
Avon book to order from....40% of sales profits go to Rett Syndrome Research Trust
and more prizes to come!
Raffle tix are $1 or 6 for $5

Celebrate Sara

Fuddrucker's
6100 Wade Hampton Blvd
Greer, SC 29651

October 30th 5pm to 8pm

We are holding a fundraiser to benefit Rett Syndrome Research, in honor of our Daughter Sara. She is eight years old & has Rett Syndrome. It has caused many complications in her life and left her completely dependent on us for her care. She has had a hard past year, and we want to celebrate her life, her strength, her wonderful personality and the fact that she is still here with us. God is so good!

Come join us for burgers, and meet Sara. We will have raffle prizes, tickets are a dollar each, as well as a silent auction. The proceeds and ten percent of the cost of your meal will be donated to the Rett Syndrome Research Trust. There will also be an Avon book you can order from and 40% of sales from that will go towards our cause.

Rett Syndrome is a genetic disorder that causes children, mostly girls, to lose all of their skills around 18 - 24 months old. Children who could walk, stand, run, jump, crawl, sit up, and even talk - lose all of those skills. Loss of muscle tone causes the loss of their hands to even hold a toy. Some kids are no longer able to chew or swallow and need a feeding tube. Most kids have severe reflux and constipation issues. Seizures, severe scoliosis and breath holding are common with this disorder. The worst part is the loss of speech. Kids who could talk suddenly can’t speak anymore, the lucky ones can hold onto a few words. These kids are mentally fine and they need our help. A cure has already been found in mice. There are several other promising studies going on that leads scientists to believe Rett Syndrome WILL be cured. We simply need research money. So come join us at Fuddrucker's, and help us.

Children with Rett Syndrome deserve a chance at life.

Last Minute Bake Sale

Last Friday night a friend and I decided to go to the flea market Saturday and do a bake sale, pass out flyers and ask folks to vote. Thankfully another friend helped bake cookies. So in six hours we made signs, and baked LOTS of cookies. We took miss Sara with us to the flea market, and she enjoyed seeing all the people. She smiled almost the whole time. We were there for 4 and a half hours and raised $108 to donate to Rett Syndrome Research. We hope to do it again.

If you would like to donate you can do so through our fundraiser page here www.firstgiving.com/loveforsara The money goes to the Rett Syndrome Research Trust.

Newspaper story, CMN, and Your Carolina

The Travelers Rest Monitor printed Saras story today! It is beautiful and a long article too. On October 28th, Sara and I will be doing an Interview on Your Carolina about Rett. I'm nervous about that one! We went a couple weeks ago to record her story for The Children's Miracle Network, and they also did a little video. It is so amazing that after years of trying to spread the word, things are finally happening.
I wish that Sara did not have Rett, but she does. I'm not seeking attention for her or myself, but seeking attention for all the girls who suffer from the rett monster. My wish is that one day, these girls will talk again, stand again, take a step or even hold a toy and play. Rett has been described as the Rosetta stone for brain disorders and scientists believe it will be the first condition to be cured, and will unlock more information about other disorders like Autism, Parkinson's, Bi-Polar, and Schizophrenia. This is why we are asking folks to vote for the research money.
You can vote at the website www.refresheverything.com/search/?q=rett
You can login in there or log in using facebook
You can also vote by texting 100842 to number 73774
Please vote each day in July and August and ask others to as well. If you want to see pictures and read about other girls who have Rett, pleace visit our facebook group www.facebook.com/group.php?gid=112340235482576&v=info

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

No Surgery and Sara was very sick

Sara got sick around April 8th and was vomiting a lot. It got to where she couldn't hold anything down. I took her to the doctor twice and the emergency room once. They told us that it was probably just a cold or sinuses and the drainage was making her vomit. They gave us a prescription for nausea and vomiting and told us to give her pedialyte. It didn't work at all she couldn't hold it down. Her surgery was cancelled. The night of April 28th she started a fever so I knew I was taking her to the doctor he next morning. When I got up, I went ahead and got my shower and got ready to go. When I went to get Sara up, her fever was 105.5, she was breathing hard and fast, she had vomited and was unresponsive. I called her dr and he said to bring her there before going to the er. So I threw some stuff in our bag because I knew she was headed to the er. We got to the doctors office and he said she needed to g to the er (duh yes I already knew this!) he came back in the room and said he had called an ambulance for her. Thank God my MIL was nearby to get Logan. I rode with Sara to the er, and she was getting worse and worse. She was clammy, her heart rate was 218. Still unresponsive. We got to the er and there were so many people working on her trying to get an iv started. Then shortly after we arrived she went into cardiac arrest for about five minutes. Her heart had electrical activity but no pulse to pump the blood. They started doing compressions and bagging her. I think I was shocked or God was keeping calm, because I knew what was going on and all I could do was stand there rubbing and kissing her foot praying for her not to die. Jason was on his way he was stuck in traffic and didn't get there till it was all over. He didn't know what was going on. They got her back and got several ivs started. The doctor kept saying she is very very sick. Once she was stable they moved her up to PICU and told us she was very sick and it would be 2-3 days before we would know if she would make it. Her kidneys weren't working properly, her stomach couldn't handle any food, she was on the hey told us she may have brain damage or need dialysis for her kidneys. Eventually she started getting better. Her doctors told us that only about 11% of people who experience what she did survive, and they had sent her to PICU not expecting her to live. All of the doctors said they were amazed at how well she was doing, that her story would be one they would remember. They finally got her off the vent, and she did great. They stopped the sedation and after a few days she woke up. She did not seem to recognize anyone or to be the same child for a few days. She got moved out to a regular room and finally returned to her old self. Seeing that first smile, getting that first kiss after all that happened was wonderful. She was laughing and happy just like before she got sick. She got to come home May 19th. She has been doing well ever since and now weighs 42lbs which is the most ever. Still smiling, laughing, hugging and kissing. She has even managed to say "I luh" when I asked if she was trying to say I love you, she said "yeeaaahhhh" and smiled! She is our little miracle and such a blessing. Poor Logan is afraid we will have to leave him again. He asks everyday if Sara has to go to the doctor or the hospital. He will be okay though. I missed my little man!