Sunday, July 25, 2010

Coming to you unabashedly

I have a friend named Tonya who has a BEAUTIFUL daughter named Sara.  
Sara, like Kaedra, has VEPTR rods to help her.  However, unlike Kaedra, Sara has a horrible syndrome known as RETT Syndrome.  

Here is one definition of RETT (from Wikipedia):
Rett syndrome is a neurodevelopmental disorder affecting grey matter.[1] The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures.[2] They typically have no verbal skills, and about 50% of females are not ambulatoryScoliosis, growth failure, and constipation are very common and can be problematic.

Here is some more information: RETT Syndrome

Here is a little about Sara, in her mother's words:

Hi I'm Tonya, my daughter is Sara. She is eight years old and has Rett. Sara is on the severe end of the spectrum needing total care and can't do anything for her self. I take care of her myself 24 hours a day. I do not think of her as "less" because she has Rett. She has taught us so much in her eight years, brought so much joy and love to our lives, and the people around her. She hardly ever complains either. God has blessed us with a wonderful child. A child who I am sure would love to be able to hold a toy. When I see her frustration when she tries to hold a toy to play and drops it everytime, Everyday when I see her trying so very hard to talk to me, on the rare occaision that she does cry and we don't know what is bothering her, I'm sure she would want to be able to tell us, when she lays there and watches her brother run and jump and
reaches for him, when she looks at our food and drink so longingly but she can't eat it because she will choke or aspirate, these are the things that keep pushing me to vote for these "stupid" contests and keeps pushing me to do whatever I can to bring awareness to Rett, and possibly funding for a treatment or cure. Treatment and cures cost money the healthcare industry is about money. I believe the doctors and researchers working on Rett do truly care about our girls, but they aren't going to pull the money for a treatment or cure out of their own pockets. We shouldnt have to vote in these things we shouldn't have to raise awarness for Rett after everything else we do for our kids, but if we dont who will? Eery little bit of funding and awareness helps. After watching Sara die in front of me just last April, and seeing them start chest compressions and start bagging her for five minutes, seeing them with the help of God bring her back to us, waiting for days to see if she would live, you bet your behind I want a cure. It may be too late for a cure to help my child or any child with Rett currently alive. But maybe the next generation can be helped, the kids won't have to struggle. Sara is such a joy, so perfect and innocent. I feel that she is the best thing on earth (well her and her brother) lol and this is why we seek a cure.
To help her, not change her into what we want her to be. She is perfect the way she is, but if there is a way to help her have a better quality of life, to help her not have to struggle, then we are for it.
God bless you all, and take care, hug your angels extra tight
Tonya And Sara in SC 

There is an easy, painless way you can help Sara and Tonya and all the other girls that have RETT Syndrome.  Please go to this address and vote for RETT syndrome to get money from the Pepsi Refresh Project.  Please go every day.  (this contest ends at the end of July. If RETT doesn't win, they will also be in the running for August) Please tell all your friends.  Please, please help this children get the money for the research they need.  There have been advancements in the cure, but they need more money.  This contest could give them the chance to save many, many lives.

Thank you so much!!

1 comment:

Lisa Marshall said...

What a beauty. I voted and will continue to do so.