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. 

 

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Anna's Story - 2019

Anna's Story - 2021

About Anna

2022 UPDATE 

Our Anna will be 5 in September.

Anna has had as many seizures in the first half of this year compared to all of 2022, but thankfully no longer ones requiring a hospital trip or stay.  She has developmental delays, autism characteristics, speech is limited, balance is an issue and sleep continues to be a problem.  Andrew and Kim take turns sleeping with her and during naps. Multiple medications are given twice a day, which on some days can be a challenge. She is still on the ketogenic diet that severely restricts the type of foods she can eat.  She has never had an ice cream cone, pizza, potato chips or a candy bar.  Andrew and Kim are diligent in avoiding seizure triggers like taking her outside when it is warm or when she is overly tired.  Nevertheless, a seizure can happen randomly so someone needs to be near her all the time. She also has weekly therapy sessions of various types.

Kim and Andrew were hoping she would get in a new clinical trial using a new genetic approach this year, but she did not qualify which was a big disappointment. The wait for a cure or disease modifying treatment will have to wait and we don’t know how long that will be if ever. So much has been learned about Dravet syndrome over the last 12 years since the Dravet Syndrome Foundation was founded, but there is so much we do not know. We need more dollars for research and a cure!

Anna is a happy little girl. Her interactions with her sister Lily and new brother Connor are rare (hard at times for Lily to understand), but the times she does show them affection are special. She loves being around other people and if you are lucky to get one of her hugs and/or kisses they are wonderful and heartwarming. We love her so much. I am so proud of Andrew and Kim how they manage the care for Anna with 2 other little ones in the house. They are so brave and my heroes.

Ted Odlaug (Anna’s Grandfather) August 15, 2022

 

2021 UPDATE:

As we collectively emerge from the pandemic and look forward to the 3rd annual Dance for Dravet in October 2021, it seems an appropriate time to share an update on Anna and her journey so far.

It is hard to believe that over 2 ¼ years has passed since the first annual Dance for Dravet was held in St. Louis, late March of 2019.  We have fond memories of the event - including Anna’s presence for a portion of the evening - and remain sincerely grateful for your generous support and participation. Anna was 18 months old at the time, about 10 months after we received her diagnosis in May 2018. Looking back, it seems like a lifetime ago, with the reality of her diagnosis having set in and what’s known as an active seizure phase (which commonly begins around 18 months of age and can continue for several years) looming ahead. Her seizure count to date was only 13 at the time, but 6 of those were prolonged, difficult to stop and required hospital stays, including a surreal and traumatic 5 days in the ICU after a 3+ hour seizure about 2 months prior in mid/late January 2019. She would go on to have additional hospital stays resulting from prolonged seizures in June and August of 2019, but fortunately she has not had a similar event requiring an extended hospital stay or admission since then.  Anna did subsequently enter an active seizure phase the remainder of 2019 which continued through 2020. She has had a total of 156 seizures to date - 6 in her 1st year of life, 30 in her 2nd year of life, 87 in her 3rd year of life, and 33 so far in her 4th year of life. Currently she is about 3 months from her 4th birthday on Sept 28th.  After a very trying year in which she had a total of 104 seizures, we ended 2020 on a positive note, going 54 days seizure free from early December through early February. Her seizure frequency has generally decreased rather significantly since then and over the past 6 months, with only 11 seizures thus far in 2021 and no 911 calls and ambulance rides or ER visits in about 8 months. This has been a relief and provided a considerable improvement in the quality of life and day-to-day for Anna and her family. It also seems to be an indicator that in terms of seizure frequency and severity, the most difficult period for Anna is behind us. We are very hopeful that is the case. 

As a child living with Dravet syndrome, and similar to other children like her, 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 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 a half and in terms of expressive language she is still at the level of a 2-year old. Although she has some multi word phrases in her vocabulary, she is generally not speaking in sentences and has a difficult 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 parents/caretakers what she wants or needs, or how she is feeling. She has speech therapy several times a week and has recently made some noticeable strides recently in terms of saying new words and putting words together, which is encouraging. Sleep has been an ongoing challenge throughout Anna’s life. She does not sleep independently and aside from shorter periods when she first falls asleep for her nap or at night, either her Mom or Dad is sleeping with her. She often has difficulty falling asleep and multi hour wake ups in the middle of the night, and an inconsistent sleep schedule overall.  

Anna’s medically prescribed treatment has remained unchanged for more than a year and includes 2 anti-epileptic drugs, the ketogenic diet, cannabidiol and a few supplements. Her medications are taken twice per day and mostly ground up and soaked in water before given with a syringe. She has been receiving medication like this since she was a baby, so she is certainly used to it, but there is a daily burden associated with her meds as she is usually resistant to taking them at first. She will always cooperate eventually and constantly amazes us with her toughness and resilience.   She has been on her special high fat diet since she was 8 months old, in which her food is weighed to a specific ratio and limited to foods that contain very minimal carbohydrates and only natural sugars in small amounts. She has never eaten the foods that we typically associate with childhood such as ice cream, french fries, pizza, and macaroni & cheese, but it’s really all she has ever known. She’s aware that her diet is different and understands that she doesn’t eat the things other people eat. It’s likely she will stay on the diet for a couple more years at least, but we expect that she will eventually discontinue it, and we look forward to the day where she can enjoy some of these simple pleasures in life that are easily taken for granted. 

While her current treatment protocol seems to be helping 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 carry on with the uncertainty of her future, it can feel like a race against time for us, as these treatments are still in development during a critical time in Anna’s life. Thankfully, a few of these 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. In January of this year, Anna was called up to participate in a clinical trial for a disease-modifying approach that has been developed by a company known as Stoke Therapeutics, but she did not have enough seizures during the subsequent baseline period to qualify for the treatment. While this was disappointing in a sense, we believe it was just not meant to be and focused instead on the fact that she was doing so well during that time. Another company called Encoded Therapeutics has developed an approach to increase expression of the SCN1A gene with a new gene therapy called ETX101. Anna was recently enrolled in their observational study of children aged 6 to 60 months with SCN1A-positive Dravet syndrome. The study is designed to better understand the seizure, neurodevelopmental, motor and behavioral characteristics of Dravet syndrome over a period of 2 years. Encoded hopes to begin a clinical trial for ETX101 in patients with Dravet syndrome later in 2021. 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. 

Although Anna has been through a lot in her short life, she is an incredibly loving and good-natured child who is generally happy. While she can be challenging to look after, she is often also a calming presence. She truly has a heart of gold and brings so much joy to those who know her. Her kind and 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 started going to preschool this past March for up to 2 hours per day and has in-person therapy sessions (physical, speech, occupational, equestrian) most days of the week.  In this way her world has opened up quite significantly over the past several months, which is fortunate as such interactions are so essential to her development at this age. 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 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. From the bottom of our hearts, thank you for your generous and loving support.

 

Kim and Andrew Odlaug

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