An Answer is Found

After two years of countless tests, scans, surgeries and prayers we were finally given the news we have long awaited. Lily Kate's CDKL5 test came back positive. She has a mutation on this gene. Deep breath. In so many ways this is such closure to finally know what exactly is going on with our little girl. At the same time it is something you would never hope for. Justin says the diagnosis doesn't matter because it changes nothing about how we love her or how we are giving her everything we can to be better. He is right. It does however give me a group to relate to and a group of other mothers that understand exactly what I have been through and will continue to struggle with. She truly is a joy. This genetic condition affects a very small number and only girls. Around 50 cases have been diagnosed in the world. They believe there may be a total of 200 but the test is so new that many have not heard of it. Please feel free to check out the website www.cdkl5.com to find out more. I began feeling like a pro when dealing with doctors, hospitals and such but now I have been thrown back to the minors with this. One day at a time we will learn. Thank you all for caring. Much love!