Andrew and Kimberly blessed our family in September 2017 with the birth of Anna Grace. In her short life she continues to give us so much love and joy.
Anna was diagnosed with Dravet syndrome in early May 2018 after suffering from a number of prolonged seizures. She has been in the hospital emergency room and in ICU many times over the last 9 years and has had over 1,600 seizures. Dravet syndrome is a rare and catastrophic form of epilepsy beginning in childhood.
Please see below for a more detailed update and video messages from Kim and Andrew.
Anna's Story - 2025
Anna's Story - 2023
Thank You - 2022
Anna's Story - 2024
Anna's Story - 2022
Anna's Story - 2021
Anna's Story - 2019
About Anna
2026 Update
Thank you for continuing to stand alongside Anna, our family, and the Dravet Syndrome Foundation. Many of you have supported us since Anna was a baby. Year after year, your generosity and love remind us that we are not facing this journey alone.
Anna will celebrate her ninth birthday on September 28. If you know her, you know she is happiest in or near the water, loves music, and gives the very best hugs. Her joy is contagious, and her smile and loving spirit continue to bring light to everyone around her.
This past year has also been one of Anna’s hardest. In January, she became critically ill with pneumonia and septic shock and spent eight nights in the Pediatric ICU. We are profoundly grateful that she recovered. Just two months later, seizures at school and Influenza B led to another hospitalization - the day before we were supposed to leave for her Make-A-Wish trip to swim with dolphins. Thankfully, that trip has been rescheduled for next spring, giving our whole family something special to look forward to.
As Anna grows older, the effects of Dravet are becoming more visible. Beyond seizures, she faces significant developmental, communication, behavioral, and physical challenges. Her care has become increasingly complex, with four new specialists added this year. She now uses a wheelchair for longer outings and wears braces to support her feet and ankles. Everyday activities require more planning, assistance, and care.
Managing her seizures also means navigating difficult tradeoffs. When nighttime seizure clusters returned this year, we faced the decision of increasing medications that help keep her safe but can also leave her more sedated and less energetic. We are grateful for these treatments, while longing for options that would allow more of the vibrant little girl we know to shine through.
Dravet touches every member of our family. Lily and Connor are beginning to understand why plans sometimes change, why we cannot always do things together, and why keeping Anna safe requires so much of our attention. We have also learned to treasure the ordinary moments - a swim, a song, a smile, a good day together. We could not navigate this life without our parents, Anna’s teachers and caregivers, her medical and therapy teams, and the friends and family who continually show up for us.
These experiences make the work of the Dravet Syndrome Foundation deeply personal. Our hope is for treatments that address not only seizures, but the underlying disease and the many ways it affects Anna’s life. Gene therapy remains our greatest hope. Although Anna has not yet qualified for the clinical trials we have hoped for, we continue to believe in the possibility of better treatments and, someday, a cure.
Your support helps fund research, supports families like ours, and gives us reason to look ahead with hope.
Thank you for loving Anna and for helping build a brighter future for everyone living with Dravet syndrome.
With love and gratitude,
Kim, Andrew, Anna, Lily & Connor Odlaug