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.
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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 7.5 years and has had over 1350 seizures. Dravet syndrome is a rare and catastrophic form of epilepsy beginning in childhood.
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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
2025 Update
Anna was born in September 2017 and diagnosed with Dravet Syndrome (DS) in May 2018 after prolonged seizures. She just started 2nd grade and will turn 8 this Sunday, September 28th. Despite all the suffering that she has endured in her short life, and the considerable difficulties that living with DS brings, Anna is a wonderfully loving and good-natured child whose calm presence and smile bring light to everyone around her.
When this event was held in October of last year, Anna was in a period of stability and approaching the end of what turned out to be an 85-day seizure freedom stretch, the longest she had gone without a seizure since she was 14 months old. She has since not gone more than 38 days seizure-free and has averaged one seizure every two days over the past year. Like other children living with DS, Anna continues to face significant challenges beyond seizures, including developmental delays and behavioral challenges. Her speech has progressed only minimally and remains at a 2-year-old level. Still, Anna continues to amaze us with her resilience and spirit.
We recognize that a disease-modifying treatment is necessary to ensure a favorable outcome for Anna and allow her to one day potentially live an independent life. While there are still many hurdles, we are encouraged by the progress in research and new treatments on the horizon.
The work of the Dravet Syndrome Foundation has been vital in driving these advancements and in keeping hope alive for families like ours. Gene therapy and other disease-modifying treatments are closer than ever, and we believe they hold the promise of helping Anna and other children with DS regain developmental ground and live fuller lives with fewer seizures and less dependence on medicine.
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Our efforts are more than fundraising — it’s about community, hope, and the determination to change the future for children with Dravet syndrome. From the bottom of our hearts, thank you for standing with Anna, with our family, and with DSF in this mission. Your generosity truly makes a difference.
With love and gratitude,
Kim, Andrew, Anna, Lily & Connor Odlaug