Welcome to the 5th annual Dance for Dravet and thank you so much for being here! We are tremendously grateful for your presence and ongoing support.
Anna recently started Kindergarten and recently turned 6 years old. In the year that has passed since this event held last October, Anna has continued to amaze us with her resilience and strength and as she continues to live with Dravet syndrome and the considerable difficulties it brings. It is cruel, unpredictable, and relentless. It is a monumental struggle and there are no days off. Nonetheless, Anna gets up whenever she is knocked down, and we all just keep going.
In terms of seizure frequency, Anna had been relatively stable for about 2.5 years (averaging a seizure about once every 8 days) until May of this year. Since then, her seizure frequency has increased drastically, including ‘clusters’ that involve increased seizure activity over a short period of time. She has been having multiple daily seizures in recent weeks, and it is rare that she will go more than a couple of days without a seizure. The nocturnal seizures she previously experienced had gone away for an extended period but have returned in full force. As of late, she has been having up to fifteen seizures in her sleep overnight. Whereas sleep previously felt like a safe place for Anna, it has become the opposite recently, introducing a new set of challenges and concerns. We are of course hopeful it gets better much sooner than later.
Like other children living with Dravet syndrome, Anna continues to face significant challenges associated with her condition beyond the seizures. For Anna 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. Although she has some multi-word phrases in her vocabulary, she is not speaking in sentences and has a tough time communicating. Some of her behavioral challenges seem to be due to her inability to communicate effectively and the frustration that causes her, as she cannot tell her caretakers what she wants or needs, or how she is feeling. We have accepted that her progress will be very gradual and celebrate the baby steps she takes in her development, while remaining hopeful that she will eventually have some form of a breakthrough.
Anna’s medically prescribed treatment has been in a state of instability the past year. Unfortunately, Dravet syndrome is incredibly treatment resistant, and it is typically a matter of trial and error when it comes to figuring out the most effective combination of medications for an individual patient. It is also a moving target in that the condition tends to evolve over time, making it that much more difficult to treat. Certain medications make work for a period but then eventually lose their effectiveness. Anna has been no exception to this, and back in February we felt the need to make a change in the hopes of gaining better seizure control. Since then, and beyond her existing treatment (which includes four anti-seizure drugs and the ketogenic diet), she has cycled through 3 different anti-seizure medications, all of which have come with various side effects. The side effects of a recent failed medication were so extreme that Anna could not stand on her own and could barely function otherwise. It was a short trial but highlighted the importance of balancing medication side effects and seizure control with quality of life. More recently, and since we have effectively run out of treatment options, we made the decision for Anna to start VNS (vagus nerve stimulation) therapy, which may prevent or lessen seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. It consists of a generator device implanted under the skin in the left chest area, along with a connected wire which is wound around the vagus nerve in the neck. Anna just had the procedure done and the device activated, so it remains to be seen if and to what extent this treatment helps her.
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. As we continue with the uncertainty of her future, another year has gone by without any meaningful advancements for Anna in terms of available treatments. A few 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 will soon have access to one of these treatments and provide us with the life changing miracle we are hoping for.
Despite all the suffering that Anna has endured in her short life, she is still 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 and not taking anything in life for granted. She reminds us to appreciate the good days and cherish the little things. We believe in our hearts that her future is bright and that she will live a complete and fulfilling life.
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.
Kim, Andrew, Anna, Lily, & Connor Odlaug
More additional information on Anna and our family fundraising efforts go to www.annaanddsf.org