Amelia’s Story

Site created on July 12, 2019

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."

Newest Update

Journal entry by Ariana Griep

Amelia's surgery went well! They were running really far behind so she didn't start until 2 pm and then the procedure lasted about 3 hours. No issues whatsoever and the surgeon said everything went as expected. She's been super sleepy since then, so we're just letting her rest and take it easy for the most part.

The VNS device is slowly working its way up to the right setting by automatically increasing the amps every 2 weeks. It's also turning off and on continuously (5 minutes off, 30 seconds on). She does not seem to notice this happening, thankfully. If she has a seizure or we think she's getting ready to, we have a special magnet to swipe over the area and that adds a big electrical stimulant to hopefully interrupt the seizure signal and stop it. They said it could be 6 months before we know how well it will help her seizures.

The plan is for her to be discharged sometime this morning and then we'll head home and continue with follow-ups via Telehealth. She doesn't seem to be in any pain and the incisions are glued shut, so no need to worry about stitches.

Thank you to everyone who has kept Amelia in your thoughts and prayers! We appreciate it!!

(The connection is very slow here at the hospital, so I can't get any pictures to load. Sorry!!)

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