Embracing Life with Dravet – a Column by Sarah Lango

My 10-year-old daughter, Avery, has a rare, catastrophic, and lifelong form of epilepsy called Dravet syndrome. Recently, I have expressed the difficult emotions and experiences that accompany this reality. These hard things are all true, but there is another truth, too: She makes me smile every single day. Some…

When we’re at home, Avery is just Avery. But when we enter the world, go to school, or attend organized activities where age-appropriate social interactions and behaviors are the norm, Avery becomes someone who exists outside the norm. Avery is my 10-year-old daughter who has Dravet syndrome. Because of…

School started this week for my 10-year-old daughter, Avery. In many ways, Avery is like most kids — she is social, values friendship, and wants to be accepted by her peers. But in other ways, she is very much unlike her peers. Avery has Dravet syndrome, a rare, severe,…

Earlier today, I sat on the empty bleachers at our elementary school, where my daughter was participating in a youth cheerleading camp. The rest of the parents had left, but I remained because Avery has Dravet syndrome, which means she is prone to having seizures, and I wanted…

When my daughter Avery was a toddler and we found ourselves in the thick of regular seizure activity due to her Dravet syndrome, I remember someone asking, “Will Avery be able to attend school?” The question sat unanswered in my heart and mind for some time as I asked…

When my 10-year-old daughter, Avery, was younger, we religiously kept track of the length of time she’d go without having a seizure. She started having seizures when she was only 3 months old. We discovered later that the seizures were due to a difference in her SCN1A gene, which…

My youngest daughter, Avery, has Dravet syndrome. Because of this diagnosis, the treatments she needs, her day-to-day care and supervision, and seizure triggers, my world has largely revolved around her for the past 10 years — but my other kids need me, too. This has probably been the hardest…

When my husband, Jonathan, and I got married 17 years ago, there is no way we could have anticipated the hardship that lay ahead of us. While all marriages and relationships experience some measure of difficulty, the tumultuous seasons and trauma related to our daughter Avery’s Dravet syndrome diagnosis…

“Mom, we need help. Baby is having a seizure.” The words, unclear and jumbled, came from my 10-year-old daughter, Avery, who has Dravet syndrome. Avery loves imaginative play, and her favorite thing to do is play with her baby dolls. Recently, that play has included her baby dolls having…

Note: This column describes experiences the author’s daughter has had with vagus nerve stimulation. Not everyone will have the same response to treatment. Consult your doctor about any potential therapies you may be considering. When my daughter, Avery, began having seizures at 3 months old, I knew we’d do whatever…