Arika's Fight Against Dravet Syndrome

Arika’s Story I knew from the moment I found out I was pregnant, that I wanted the baby to be named after two of the best people I know; my great grandfather Billy Randal Finley and the father of my beautiful children, Eric Roesner. On June 27, 2011, we were blessed with a beautiful little girl named Arika Finley Roenser (pronounced Erika). At 6 pounds 15 ounces and 19 inches long, she was perfect!! She was the pride and joy of her older brother Keegan and older sister Brooklyn. The first 6 months after she was born were perfect; she even slept well at night. She enjoyed watching her brother and sister play. She tried very hard to imitate her siblings.   On Tuesday, January 10, 2012, our lives changed FOREVER. Arika went to spend the day with her Mimi (my mother), so that she could take her to the doctor for her six month immunizations, while I was at work. I had to work late that day, so Arika’s Aunt Jodie picked her up and took her home until I could pick her up. When I arrived to pick her up a few minutes after 5pm she was so excited to see me. She had a busy day at MiMi’s and now with Aunt Jodie. She was happy, playing around with her cousin Nickole. I picked her up and we were getting ready to leave, as I was holding Arika her left arm went straight in the air and started to jerk. I turned her over and she was just staring at me and would not respond. At first I just thought it was nothing. It might sound crazy, but nothing was ever going to happen to my baby girl. After about 30 seconds of the jerking and her not responding to me, I knew that something was terribly wrong. I thought a possible stroke because it was only on her left side and at this point it was in her left leg also. We called 911 and I just held her in my arms helpless for what seemed like an eternity. I kept asking what is taking them so long to get here? As all of this was going on Keegan her big brother, who loves to protect her is watching this horrifying thing happen. Everyone is frantic not knowing what is going on with Arika. The ambulance arrives and the paramedics tell me she is having a seizure and we need to rush her off to the hospital.   Arika’s seizure that day was 45 minutes long and her fever spiked up to over 103 degrees in a matter of minutes. She was admitted to the intensive care unit and we stayed 3 days. After a CT SCAN, a MRI, Spinal tap, EEG and tons of blood work everything came back NORMAL. The doctors told Eric and I that she had a febrile seizure. They said that the shots would have caused the fever, the fever caused the seizure and that it would more than likely not happen again. We decided to opt out of their suggestion of putting her on Phenobarbital (an anti-convulsion medication) because we did not want to medicate her if it was not necessary.   Tuesday, January 31, 2012, Arika had another seizure; again starting in her left side. This time we were lucky and it was only 10 minutes. We still went to the hospital though to have her checked out. She suffered from Todd’s Paralysis (a focal weakness in a part of the body after a seizure) but returned to normal after just a few hours. At that time we decided to start Arika on a anti-convulsion medicine called Keppra (I was against Pheno because of possible side effects).   Tuesday, March 15, 2012 , Arika had another seizure. This one also started on her left side then generalized throughout her body, it lasted for 45 minutes again. I was at work and rushed to the hospital as fast as I could. This time was different though. When I arrived at the hospital my little girl was blue in color. The emergency room staff rushed all of us out of the room; Arika had stopped breathing. I thought in that moment that I was losing my little girl. All I could do was pray that my baby girl would live to see her first birthday and pull out of this seizure. The doctors came out and told us that they had to put Arika on a ventilator because all of the medications that they had to give her had caused her to stop breathing.   Tuesday, May 22, 2012, Arika had another seizure; it lasted 70 minutes this time. She stopped breathing again and was placed on a ventilator for 14 hours. The doctors and nurses were amazed at all the medications that they had to give her to stop the seizure. They couldn’t believe that the seizures were so resistant to the medications. I demanded more tests; I knew that something was not right. How can you tell me that there is nothing wrong with my daughter? A 45 minute seizure is not normal and now a 70 minute seizure!! I demanded more tests. She had another MRI and EEG and both came back normal. We had a cardiologist come in and do an eco-cardiogram and an EKG and the tests all came back normal as well. I didn’t understand how it was possible! The doctors blew it off as if it was nothing. They said she is just having severe febrile seizures. But how could that be? Not every seizure did she have a fever. We added Phenobarbital at that point to her medication regiment and had her blood drawn every other week to check her levels and adjust meds as needed.   Arika has since had a seizure every 6 to 10 weeks. 90 percent of her seizures are on Tuesday’s, between 4pm and 6pm. We have tried to find a trigger or something that may be different about Tuesdays, but have had no luck. After seeing 4 pediatricians, 3 neurologists and a cardiologist and them all telling me that this is all normal and there is nothing to be concerned with; I still would not accept their answer. At one point, after Arika resisted 4 different medications and was still not able to get her seizures under control, her pediatric neurologist at the University of Michigan referred us to The Cleveland Clinic, because his exact words were, “ I am at a loss and need help”.   In November of 2012, Arika’s Aunt Tiffany, whom lives in Wyoming saw a fundraiser on facebook for a girl with Dravet syndrome in Colorado. She told me about the little girl and the similarities between her and Arika. I googled Dravet syndrome and my heart sank. Everything that I was reading was so much like Arika! It was so very scary reading the stories of children and the heart wrenching journeys that they have all been through. I called our doctor and we were at the lab 2 days later getting the genetic testing done.   January 21, 2013, we received the news that I had known already in my gut. Arika has a mutation in SCN1A; Dravet syndrome. My worst fears had come true! My baby girl is sick and will never be 100% healthy. We have had such a long journey and my little angel has been through more in the 21 months of her life than most people will go through in a lifetime. It was VERY hard to accept the diagnosis at first, but we have come to embrace it. I knew that I wanted her to be strong person and a fighter, what a better way than to have her dad and her great-great grandfathers names. God only gives you what you can handle and that is why he made her extra special for us!