Jane was born perfectly plump and happy- the most cheerful soul. She slept and snuggled and smiled. But at 4.5 months old, she had her first hemiclonic seizure. Of course they ran all the tests at the hospital and told us it was probably a fluke, that she’d probably never have another seizure again. But six weeks later, Jane had another hemiclonic seizure lasting several minutes.
This continued for months and months. As Jane grew she started having new seizure types: 4 total. She would sometimes have 50+ a day. When we took her to a new doctor, an epileptologist, he ordered the genetic testing that we would need to understand that Jane has SCN1A positive Dravet syndrome. This was a few months before her second birthday and I remember getting the call in a Starbucks drive through before a big snowstorm and just bawling my eyes out, not wanting to ever drive home and tell my husband.
Our family spent most of Jane’s early childhood indoors as so many activities caused seizures. Jane’s main seizure type is focal, and she commonly stops breathing. Paramedics knew our home because they were there so often. We tried medication after medication. When Jane was 4, she was on FIVE different medications to control her seizures. She barely walked on her own for more than a few minutes and needed ankle support, was sick often, and was always angry. It wasn’t uncommon for us to fight with her for an hour a day to get her to take her medicine. We barely left our home, barely slept, and we hovered over her constantly because her seizures are so quiet that the eye rolls are the only sign at first. We knew the odds and I woke up every morning, sick to my stomach with dread wanting to make sure she was waking up too. The anticipatory grief that Dravet has caused weighed so heavily on us.
In 2023, Jane had a device called a Vagus Nerve Stimulator (VNS) implanted. It has really been a miracle to stop most of her seizures. We worked on a slow plan to try and take medications away and were able to remove some of the hardest ones for her. She is really improving. Her angry outbursts have gone away. She is running and jumping for the first time and starting to get out in the world.
Jane is now able to do ballet, acting, and is starting Kindergarten this year with an IEP. We are happy to be celebrating 6 months seizure free and to have only had 4 seizures total in the two years since her VNS was placed. We are so grateful to this community for helping us navigate the last 5 years full of strength. We are so hopeful that a cure is around the corner so no family has to go through this.
While Dravet syndrome has given our family the lowest of lows, it has also taught us about living life differently. As her mom, I want to give both of our kids every opportunity to explore our beautiful world that I can. It just looks different for our family. There are so many things to consider when planning our lives. But living so darkly for so long was also a gift in a way. The perspective and empathy this has created in our hearts has changed our hearts.
