Anna was born in September 2017 and diagnosed with Dravet syndrome in May 2018 after suffering from prolonged seizures. She has been to the hospital emergency room many times and experienced over 1200 seizures in her short life. Similar to other children living with DS, Anna faces significant challenges associated with her condition beyond the seizures. These include developmental delays, sleep disturbances, physical limitations, behavioral challenges, sensitivity to illness and traits associated with autism. Despite the considerable difficulties that living with Dravet syndrome brings, Anna continues to amaze us with her strength and resilience. She recently completed Kindergarten and will be starting First Grade in the fall. She is very affectionate and usually has a smile on her face.
State of Science
In 2017, NIH funding saw a significant increase as new therapeutic approaches, such as gene therapy and antisense oligonucleotides, began to show promise. Research efforts expanded to include more clinical trials and translational research aimed at directly benefiting patients with Dravet syndrome.
Unfortunately, Dravet syndrome is very treatment resistant, and Anna continues to have frequent seizures despite taking multiple medications. We recognize that a disease-modifying treatment such as gene therapy is likely necessary to ensure a favorable outcome for Anna and allow her to one day live an independent life. Some of these potential treatments are in the later stages of development, making truly disease-modifying therapies closer to reality for DS. Such progress can be attributed to the Dravet Syndrome Foundation and the work they have done in supporting associated research advancements. We remain hopeful and optimistic that Anna will soon have access to one of these treatments and provide us with the life changing miracle we are hoping for.
Before DSF: Anna’s family faced an overwhelming battle with frequent seizures and complex challenges, without any hope for disease-modifying treatments.
With DSF: DSF’s dedication to research offers hope for groundbreaking treatments, such as gene therapy, that could change the future for Anna and other children with Dravet syndrome.
Hope for the Future: The Odlaug family holds onto the promise that research will soon deliver life-altering therapies, offering Anna and others like her a chance at a more independent, fulfilling life.
We are grateful for your support of the Dravet Syndrome Foundation, a very important and meaningful cause for our family. Please join us on this journey! Your donation puts us one step closer to meeting our fundraising goal and it will truly make an impact for those living with Dravet syndrome.
Thank you.
Andrew, Kim, Anna, Lily and Connor Odlaug
