Paisley Mae Mix was born on April 14th, 2011 by C-Section at 8:26 in the morning to myself (Jacque) and my husband (Cody). She is our first child, and we were beyond excited to finally have her here with us! She weighed 6 pounds 7 ounces and she was the most beautiful thing I had ever seen. Right after she was born she was rushed to NICU and I was sent to recovery. Before Paisley was born the found 2 large cysts on an ultrasound, so they wanted to do an MRI and ultrasound on her head as soon as she was born. We were told that when she was born she would probably have the cysts drained and then she would live a perfectly normal life. As it turned out, that was not the case.
Just four hours after birth, our little angel was diagnosed with Aicardi Syndrome. We were told that she would never walk, never talk, she would be severely mentally retarded, she would have horrible seizures, she would be blind, and she would probably not live very long. I don’t know how to describe what my husband and I felt when they told us this, (very rudely, I might add) because this was not what we were expecting. She was perfect and beautiful and our little baby. How could something so horrible happen to such an innocent little person?
We were sent home knowing that the seizures would probably start somewhere around 3 months of age, and that’s when things would start going downhill. Unfortunately, Paisley started having seizures only a month after she was born. She was started on Phenobarbital right away, and we were told to tell her doctor if was helping or not. A few weeks after starting on the Pheno, she was having less severe seizures, but she was having up to 20 a day. So her doctor started her on Topamax. So far, it seems to be helping and she’s down to having 5 to 10 seizures a day, but we were really hoping for better.
We went to her neurologist at Phoenix Children’s recently, and he told us about a new drug called Vigabitrin. He said he’s had pretty good success with some of his other Aicardi patients, so my husband and I are trying to decide if that’s the way we want to go. Paisley’s lacunae is pretty severe, and because the Vigabitrin can cause vision loss, we’re worried that Paisley will completely lose her sight. We just want the best possible life for our little miracle.
So far Paisley is seeming to be hitting most of her milestones, like holding her head up be herself and smiling. (She is always smiling!) We know that there will be some things that she won’t be able to do, but we have hope that things won’t be as severe as the doctors say they will be. I could not imagine my life without my daughter. I feel like I appreciate every single moment with her more because of this syndrome. We live life day by day and just pray that she will be happy and love life as much as we love her.
Mommy and Daddy love you, Paisley Mae. You are our special, beautiful, amazing gift! We will love you forever.
1 thought on “Paisley Mae Mix”
Thank you for sharing your beautiful story. My niece was just diagnosed. Your story helped me understand aicardi better. God bless your beautiful family.