Embracing Life with Dravet – a Column by Sarah Lango

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…

When my daughter Avery was diagnosed with Dravet syndrome at just 10 months, it felt like life was constantly hanging in the balance. She had been having lengthy seizures that required medical intervention regularly, and I could only watch helplessly as Avery fought for her life every couple…

When my 10-year-old daughter, Avery, had her first seizure at 3 months old, I was all in. I made it my priority to find a solution. We didn’t yet know what was causing her to have seizures, so I fought with everything I had to figure out what was happening…

When my daughter Avery was diagnosed with Dravet syndrome at just 10 months old, I wondered what her life would look like. I knew it would be different from that of her peers, particularly as she grew older. Some of my greatest questions became: Will she have friends? Will…

I woke up and rolled over to the ordinary sight of my daughter, Avery, lying beside me. Her long, underweight body wrapped up in the blankets is an everyday reminder that our life and sleeping arrangement are unique. Most nights, it’s impossible to forget she is there. Her lanky legs…