This is Seth and he has Dravet syndrome. His mom Paola shares:
We live in the Poconos in Pennsylvania and we love it here. Seth has the love of his mom Paola and step-father Isaac, his father Robert, and his sister Amariah. Also his grandparents Martha and Carlos who have been here for every seizure and Aunt Carla and cousin Valentina, who are inseparable from him. Seth’s wonderful support system is Amariah and Valentina. The three love doing everything together from going to the beach or just playing in the back yard. What brings me joy is seeing how caring others can be with Seth. Seth has developmental delays, but that doesn’t stop anyone from showing him the joy every child deserves. I love seeing Seth interact with others just like any other child would. I enjoy doing fundraiser events, like walks and day camps where I get to meet other wonder families going through the same obstacles but still smiling.
Seth had his 1st seizure on December 27, 2013, when he was 4 months old. I had just picked him up from Grandma’s house where he was being a little fussy. At home as I was holding him he began to shake and I panicked put him in his car seat and drove him and his sister quickly to the hospital. His first seizure was 15 minutes and I still remember every minute like it just happened. He didn’t have another seizure until after taking a bath at 6 months. Then at 8 months was when our struggles really began. He had seizure after seizure and appointment after appointment to try and figure out what was going on. After feeling like we lived in the hospital, Seth was diagnosed with Dravet syndrome at 18 months. It was a struggle trying to understand what was happening and why. It took a toll on our family and caused many challenges of how to balance being in and out of the hospital. Most of his seizures were status lasting 15 minutes to an hour and 45 minutes. We were taken to Lehigh Valley hospital and Seth was being intubated every time. It was hard seeing my child go through this but then I met the Dravet support system, things began to feel a little easier.
I hope that Seth grows up to have the same joys that other kids have. I want to see him continue to develop and learn new things. Seth is a happy 5 year old boy who struggles with this challenges. I pray we find how to control this horrible syndrome so that our kids don’t have to suffer. As for the Dravet community, I love the support and help you have given me. I love the events and meeting more families like mine. I look forward to spreading the knowledge of this syndrome and how epilepsy can effect your child, and the people around them.
My advice for newly diagnosed families is that this syndrome in not fair, but keep your head up because there is support out there. There is no one medicine works for all but keep trying and reach out until you find something that works for your child. If you have questions ask, and if you need help ask. You will be your child’s biggest advocate.