Katelin's journey began on June 5, 1993, although we had no idea how difficult it would become. She reached all her milestones-laughed, played, talked and walked all right on time. Then, around 15 months, she began to lose her skills, she stopped growing, she started to scream, pull her hair out, and bite herself. By 18 months of age all her skills except for walking were gone. Over the next couple of years she developed seizures, lost weight and hand use and was diagnosed with RETT SYNDROME. Now, Katelin is 20. She has a severe hunchback, continues to battle anxiety, GI issues and cannot speak more than a few words, but she's one of the lucky ones. She can speak a few words, has some use of her hands, still walks and has relearned how to play, throw a ball, swing and swim. And with the incredible strides in technology is learning to use an "eye-gaze" device to communicate.
So many parents will never hear the words "mommy" or "daddy", they'll feed their child every single meal, some through a feeding tube, some will have to sit by and wait until their child's scoliosis becomes so severe, it crushes their internal organs and they die.
So many children will never speak again, walk, or use their hands. Their days will be full of therapy and medications. Some will need a feeding tube and many will die from seizures, GI emergencies, cardiac arrhythmia, pneumonia and other complications.
But, there is hope! Rett Syndrome has been reversed in the laboratory and on going research studies are giving us hope for treatments that will enhance the quality of our children's lives. The NNZ-2566 Drug Trial is such a hope.
Your donation today, by helping Katelin get to Texas and stay for the two months during the trial period, will give children and adults with RETT SYNDROME a HOPE FOR A CURE! Hope that one day they will taste food again, walk again, use their hands again, be seizure free.
Thank you for your generosity and please share as you are able and willing with family and friends.
For more information about RETT SYNDROME go to http://www.rettsyndrome.org/
For more information about NNZ-2566 and to follow Katelin's Trail to a Texas Trial follow her blog at www.trailtoatexastrial.wordpress.com