My name is Ava and I am a very happy girl with a brilliant sense of humor despite my plethora of daily challenges. I look forward to riding horses, family time, my school mates and fabulous food. I also have Atypical Rett Syndrome due to a deletion on my CDKL5 gene; it is recognized as the CDKL5 Disorder. I have many obstacles to overcome in my life but I focus on finding the silver lining offered each new day. It took many doctors over 6-years to find the CDKL5 gene that gives my body so much trouble. I hope that together we can make this task a bit less of a burden for future children facing similar challenges. Thank you for taking time some time to explore Rett Syndrome Disorders, I hope you can help us by contributing to our journey towards much needed treatments and a cure.