Piper was born with Agenesis of the corpus callosum. This is the band of fibers that connects the two hemispheres of the brain, Piper’s failed to develop. The doctors told us to just wait and see how it affected her life. When she was born she was healthy and developing normally until she had her first seizure at 3 months old. We spent months in the hospital trying to find seizure control through medications. We learned that agenesis of the corpus callosum, seizures and lacanue (holes) on the retina are the three markers of a rare genetic syndrome that is only seen in girls. She was diagnosed with Aicardi syndrome at 5 months old.
The seizures that are typical of her syndrome are infantile spasms and almost impossible to treat with medications. At one point she was having a cluster of spasms every hour for up to 20 minutes which is roughly 500 small seizures. She now has 2-6 clusters a day, and we have exhausted our options with medications. At only two years old she has been on 9 medications and the ketogenic diet and none of these treatments have worked. She is non verbal, cannot crawl, sit, stand and is wheelchair bound. She has vision impairments and we don’t know how well she can see. She is 100% dependent on us. Developmentally she is at a 2-4 month level. She has the ability to learn if we could control the seizures.
After months of desperation we learned of the amazing things taking place in Colorado and the Figi‘s success with high CBD oil. We decided that is was our only hope in saving our little girl and planned to move to Denver. In August, Piper, her mom and grandfather moved from Tennessee to Colorado while her dad stayed back to work. She started her first dose of Charlotte’s web on October 14, 2013. She is still on a very low dose but we have seen some small changes. We are very hopeful that over the next few months we will see even more amazing things. We feel extremely blessed to have the opportunity to try this amazing treatment.