Embracing Life with Dravet – a Column by Sarah Lango

A couple years ago, I was talking with several other parents when the topic of parenting “sweet spots” came up. They all had kids similar in age to mine, with one difference: My youngest daughter, Avery, has Dravet syndrome. These parents talked about entering the season when their kids…

When my daughter began having seizures at 3 months old, I immediately went into fight mode. At that time, Avery was a perfectly healthy and typically developing baby. I thought there had to be a reason these seizures were happening, and once we figured that out, we could find…

My 10-year-old daughter had an absolute meltdown when it came time to leave a family birthday party the other day. I tried to bribe her. I got down on the floor beside her to reason with her. I reminded her that there could be consequences if she didn’t listen to…

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…