2026 Update
Eden is now 11 years old — growing fast, full of personality, and still showing us what strength and resilience truly look like.
This past year and a half have been tough for our entire family. In 2024, Eden lost access to Belviq, the medication that had been working so well for her. When she had to come off of it, she experienced a huge increase in seizures — more hospital visits in three months than she’d had in the previous six years combined. It was a very difficult and scary time for our family.
Eden has since started a new medication, Bexicaserin, and while it has helped some, it hasn’t been as effective as Belviq was for her. She continues to have seizures daily, with larger ones happening weekly — sometimes up to 10 in a single day. We’re still trying to find the right balance and the next best steps for her care, and we’re working closely with her doctor and care team.
These past 2 years have affected all of us deeply. Her brothers have watched her seize countless times, feeling helpless as they see their sister endure so much. Eden’s fragility has led to serious injuries — black eyes, chipped teeth, and even a broken arm — reminders of how unforgiving Dravet syndrome can be. It has tested our family’s mental, physical, and emotional strength in ways that are hard to put into words. Yet through all of it, our faith keeps us strong. We continue to lean on God for comfort, peace, and endurance. While this journey has brought heartache and fear, it has also drawn us closer to one another and deepened our dependence on Him. Our ultimate hope is in Jesus, and we trust that He has a plan for Eden’s life — one filled with purpose and love beyond what we can see right now.
Eden continues to inspire us every day. Her courage, humor, and determination shine through even in the hardest moments. This year has been a vivid reminder of the cruelty of Dravet syndrome, but also of the power of hope — hope for better treatments, for progress, and for brighter days ahead.
We couldn't do this without all of the friends and family who continue to check in, pray for her, and keep our family in your hearts. Your love and support truly mean the world to us.
2024 Story
Eden is full of love, compassion, and kindness. She is a green eyed, 9 year old sweetheart full of love, empathy, and sass. Eden is the most loving and caring person that you will ever meet and has a heart like no other. She sees the best in everyone and although she may not always communicate well, she desires to make people happy. Eden lives with her parents, Jason and Meredith Bankston and 2 brothers Elijah and Easton and is the absolute light of their lives. While her life has been anything but easy and normal, her resilience always shines brightly.
At 4 months of age, Eden had her first seizure that lasted over 30 minutes long. It was the first of thousands to come in the weeks, months and years following. Eden has experienced many different seizure types over the years and has required more ambulance rides and hospital stays than you can count on two hands including 3 intubations. Her longest seizure to date lasted over 5 hours. At 2.5 years of age, Eden was diagnosed with Dravet syndrome, for which there is currently no cure and has limited medication options. The diagnosis of Dravet syndrome shook her family to their core as they now knew what potentially lay ahead- a life full of seizures, developmental delays and so many other debilitating comorbidities.
Eden has faced many challenges in her short life and has continued to amaze everyone by making progress and attending an array of therapies with sheer determination and a will to persevere. Eden is developmentally delayed and is a 9 year old with a 3 year old mentality. She has been in numerous drug trials and has to travel across the country for specified care at least 4 times a year. She attends school in a special needs class and has a hard time retaining information. Eden as well as all patients with Dravet syndrome are at extremely high risk for SUDEP (Sudden Unexplained Death in Epilepsy). Because of this she is constantly monitored and will never live independently. She has had multiple surgeries and has endured more in 9 years than most will see in their lifetime.
In these 9 short years, Jason and Meredith have learned that Dravet syndrome and her disabilities will not define Eden. Although her disabilities are obvious and overwhelming, her abilities are amazing, and her family is so proud of the sweet little girl that Eden is. They celebrate ALL wins, whether big or small. While a cure may never be found during Eden’s lifetime, Jason, Meredith and other families hold onto the hope for more research, trials, and medications available to aid in seizure control. These children deserve better, much better. They deserve to be kids and the hope is that one day kids like Eden can enjoy life to the fullest without the threat of seizures. If it weren’t for the Dravet Syndrome Foundation, Eden would likely not be here today. They have funded research that has changed the landscape for those diagnosed with Dravet syndrome and continue to advocate for our loved ones. The work is not done though, and we will not stop fighting and raising funds for research until there is a cure.