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 several times over the last 4.5 years and has had over 200 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.

 

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Anna's Story - 2022

Thank You - 2022

Anna's Story - 2021

Anna's Story - 2019

About Anna

2022 Update on Anna

Anna has continued to amaze us with her strength and resilience as she continues to live with Dravet Syndrome and the considerable difficulties that come with it.  She recently turned 5 years old and continues to have convulsive seizures on a regular basis, averaging one every 7 days with an overall increase in frequency over the past 6 months or so. We have been hopeful that her seizure frequency will begin to decrease as she gets older, but so far that has not been the case.

 

Like other children living with Dravet syndrome, Anna faces significant challenges associated with her condition beyond just the seizures. These are generally referred to as comorbidities and have a substantial impact on her daily life. For Anna these have included development/ learning delays, sleep disturbances, physical limitations, behavioral challenges, sensitivity to illness and heat and some traits associated with autism. Her speech has progressed 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 generally not speaking in sentences and has a hard time communicating. Some of her behavioral challenges seem to be related 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. She has speech therapy several times a week and has made some gradual strides in terms of saying new words and putting words together, which is encouraging. We have accepted that her progress will be gradual and celebrate the small victories and baby steps that she takes in terms of her development, while remaining hopeful that she will eventually have some form of a breakthrough. 

Anna’s medically prescribed treatment has remained unchanged for more than 2 years, and includes 2 anti-epileptic medications, CBD, the ketogenic diet, and a few supplements related to her diet. We are not sure how much her current treatment protocol is helping to control her seizures, but there is a risk involved in making any changes to her treatment, no guarantees that any other medications will be any better, and those drugs come with side effects.  Her doctor has advised us to keep things as-is and gradually adjust levels of existing medications to hopefully see an improvement. 

Ultimately, 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 carry on with the uncertainty of her future, and as these treatments are still in development during a critical time in Anna’s life, it feels like we are losing this race against time. Another year has gone by without any meaningful advancements for Anna in terms of available treatments.  Thankfully, 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 largely 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 have access to one of these treatments sooner than later and provide us with the 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 usually has a smile on her face and enjoys life. Her sweet, affectionate nature, curiosity and emotional intelligence are a few of the many qualities which make her special. 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 small moments, and of just how much love we have in our hearts to give. She continues attend preschool where she goes for up to 2.5 hours per day since the school year started in late August, and she continues various therapies (physical, speech, occupational, equestrian) several days of the week. In our hearts and souls, we believe that her future is bright and that she will live a long, healthy, and complete life. 

We are extremely grateful for your generous support of Anna and other children like her. Because of you, advancements are being made to get us closer to a cure and to generally provide a better quality of life for children and their families living with Dravet Syndrome. The mission of the Dravet Syndrome Foundation is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. Your contribution tonight will directly support the foundation in this important mission. From the bottom of our hearts, thank you for your generous and loving support. 

With gratitude, Kim, Andrew, Anna, Lily, & Connor Odlaug

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