Reese Turnipseed

A place for friends and family to keep updated on Reese's progress.

Wednesday, November 4, 2009

we went trick or treating at old south gaylord. I was sweating making sure she wasn't running any body over in her walker. But, she had no problems. She walked the whole block, and back again. And even told the candy distributers 'more' every time she got candy. I had to remind her to move on.
Labels: Bumble Bee '09
Newer Post Older Post Home
My photo
Reese
was born with a rare genetic Metabolic Disorder called Glutaric Acidemia Type I (GA-1). It is 1 in 50,000. Despite her condition and the challenges that have come with it, she is the happiest little girl in the world. She loves music, being outside, make up, tea parties and of course, her dog, Georgia. Reese has low tone, dystonia, and physical motor and speech delays. She is struggling to figure out her 'wheels' as her daddy says. She started crawling when she was 21 months old (more like a bunny hop). We are working on helping her to be able to stand and walk. She also has difficulty using her hands. She has started communicating incredibly well - though quiet and someone slurred. Despite her challenges, she gets everything that she wants and needs to done. She is a daily inspiration to us all to keep on trying even when things are hard, as she never gives up. She is extremely motivated and determined to no end. We will all learn from her incredible strength and graceful courage.Thanks to all friends and family for all of your support! We love you!
View my complete profile

MORE ABOUT REESE & GA1 -

Reese was the 1st Colorado baby to be caught with ga1 at the expanded newborn screen (NBS took effect July 1, 2006, Reese was born August 2, 2006). In theory, if you catch ga1 at birth, it can be treated through diet and medicine. Unfortunately, because of how rare ga1 is, and how little they know about it, Reese was still 'affected' even though she did not have an apparent 'seizure/crisis' (which is usually the cause of the problems). We treat Reese through a low protein diet, a special formula & medicine. It is also important that Reese (and kids with ga1) go to the hospital when she is sick and is not keeping hydrated. This allows her to get hydrated through IV and get the treatment she needs to prevent any further 'damage'. But, as the affect & damage is to the brain, and the brain is mostly developed by age 2 and 3, kids are not at risk for damage after this age, even though treatment with diet and medicine, continues for the rest of their lives.

Donate to the Clinic for Special Children

Donate to the Clinic for Special Children

information on glutaric acidemia

www.glutaricacidemia.org

OR

www.savebabies.org/diseasedescriptions/ga1.php

contact us:

cocoturnipseed@gmail.com
jason@ma-research.com
Awesome Inc. theme. Theme images by molotovcoketail. Powered by Blogger.