Jul 28, 2019 Latest post:
Nov 15, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Amelia had her first seizure at 3 1/2 months old. It lasted 25 minutes and we were sent home from the ER thinking it was a fluke or somehow related to a fever that no one caught. As time went on the seizures kept coming. They were all prolonged and almost never stopped without a visit to the ER where she was administered a rescue drug. A genetic test confirmed a mutation within the SCN1A gene which lead to her diagnosis of Dravet Syndrome. We were very blessed to get a quick diagnosis only 2 months after her first episode and were able to immediately start tailoring treatment for her type of epilepsy. Even with a cocktail of different anti-seizure drugs, she still suffers almost daily from seizures. Triggers are too hot/fever, lack of sleep/overtired, excitement, becoming startled, illness, flashing/bright lights, and certain sounds. In addition to prolonged and frequent seizures, people with this mutation also suffer from cognitive and developmental delays, behavioral problems, higher than average risk of SUDEP (sudden unexplained death in epilepsy), movement and balance issues, chronic infections, dysautonomia (disruptions of the autonomic nervous system that makes it hard to regulate temperature, blood pressure, and heart rate), sleep issues, language delays, growth and nutrition problems, and sensory integration disorders. Amelia is in speech and occupational therapy to help fight against some of the developmental delays she is already experiencing. This is not something she can outgrow and right now there is no cure for Dravet Syndrome. Thankfully, research for a cure is being done for the syndrome and we are very hopeful that one will be found soon! In the meantime, we are grateful for new treatments such as CBD oil that helps control her seizures much better than we could have hoped. Every milestone reached, every special moment or smile, every seizure-free day become times for celebration in our family. We love our little warrior dearly and covet the prayers and support of each one of you. Thank you for taking the time to read about Amelia's special journey. "The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.’" Lamentations 3:22-24 If you'd like to learn more about the syndrome that affects Amelia or make a donation towards research for a cure, you may visit dravetfoundation.org. We have also set up a GoFundMe page for help with some smaller expenses that you can access from the tab "Ways to Help."