Anna and DSF

2024 Update 

Thank you for visiting! This site is in honor of sweet Anna, our 7 year old daughter, and to raise funds for the Dravet Syndrome Foundation.

​​

Despite all the suffering that Anna has endured in her short life, and the considerable difficulties that living with Dravet syndrome brings, Anna continues to amaze us with her strength and resilience. She recently started First Grade and turned 7 years at the end of September. She is a wonderfully loving and good-natured child who often has a smile on her face. She has taught us the importance of living in the present, appreciating the good days, and not taking anything in life for granted. 

​

Since October of last year, Anna had just endured a difficult period of various failed medication trials. She continued having frequent and consistent seizure activity, almost entirely in her sleep, for several months. Anna was hospitalized twice in late February and early March due to extreme seizure activity which was in part triggered by illness. It was around this time that she started a new medication called Xcopri. In June and July of this year, we began to see a gradual and then dramatic improvement in terms of her seizure frequency, duration, and severity. Since another hospital stay in early August due to illness and uncontrolled seizure activity, Anna has been seizure free. As of this writing (Oct 9th), she is currently 62 days seizure free. It is the longest she has gone without a seizure since she was 14 months old. We are so glad that she has been given some much-needed relief, and hoping she continues doing so well. 

​

Like other children living with Dravet syndrome, Anna continues to face significant challenges associated with her condition beyond the seizures. These include developmental delays, sleep disturbances, physical limitations, behavioral challenges, sensitivity to illness and heat and traits associated with autism. Her speech has again progressed quite minimally the past year and in terms of expressive language she remains at a 2-year-old level. 

​

We recognize that a disease-modifying treatment such as gene therapy is 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 Dravet syndrome. 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 and other children living with DS will soon have access to one of these treatments and provide the life changing miracle we are all hoping for. 

​

We are exceedingly grateful for your support of Anna and other children like her. Because of you, advancements are being made to get us closer to a cure and to provide a better quality of life for children and their families living with Dravet syndrome. The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. Your contribution tonight will directly support the foundation in this important mission. We sincerely thank you for your kindness and generosity.

​

With gratitude,

Kim, Andrew, Anna, Lily, & Connor Odlaug

October 2024