Hi, I’m Madeleine and I was born 11 weeks premature back in 2004. Just before I was released from the NICU to go home, my parents were told that I had PVL (Stroke in Utero) which manifested itself as right hemiplegic Cerebral Palsy and then in the summer of 2010 I started having visible seizures. I’ve been seen by several neurologists who have all prescribed various medications and even a special diet called the Ketogenic Diet. I also see all sorts of therapists. I still have many, many seizures and nothing so far has worked to heal me or make the seizures stop. My memory and motor functions have gotten worse and I haven’t progressed cognitively since I started having seizures when I was 5 years old.
This past summer I was diagnosed with epileptic encephalopathy which means that even when I don’t have clinical seizures, I am having many subclinical seizures. The doctors at Johns Hopkins noted that 80% of my sleep is seizure activity. These types of seizures interfere with my development. I haven’t learned how to read and I struggle with simple math. The doctors also told my parents that medications don’t work for me. They wanted to take out the ENTIRE LEFT SIDE of my brain this winter. And then, they put me on MORE medication. Despite the three different seizure medications that I take, I still have seizures, AND I also have side effects that are hard for my parents to deal with.
My mommy, my grandma, and my dog have moved with me to Colorado in hopes of using medical cannabis to treat my seizures. Realm Of Caring Foundation has a special strain out here in Colorado that has 0% THC and it is high in CBD, which seems to be helping other children with intractable seizures.
Despite all this, my faith in Jesus is still strong as the day I prayed to ask Him to save me when I was 3 years old. He is my perfect Daddy who adopted me to live with Him in heaven forever where I won’t have any seizures anymore. My parents love me very, very much and this is all pretty hard on them as well.
I hope that one day, on earth, I can be seizure free! I also hope I can be pharmaceutical free!
I like to play with my friends and cousins when I can and I hope to be a mommy one day. I like to watch video slideshows to help me remember things.
Thank you so much for all your prayers, thoughts, support, and words of encouragement. They mean a lot to me and my parents. Love you!