When my son was first diagnosed with seizures (even before his Dravet diagnosis which came several years later in 2015), I felt so alone in what my husband and I were going through with our son. I knew no other families in our situation at that time and felt like our own families had no idea what our life entailed with a medically complex child. I decided to begin blogging our journey in 2013 sharing with family and friends on Facebook as a way to not only share health updates but maybe allow those closest to us understand what was going on with our son. I blogged from 2013-2019 and took a break for a bit as we had welcomed our third child.
A few years (and another child added to the family) later, I stumbled upon TikTok. I had heard of it during Covid but never really cared to check it out until a friend sent me a video from the site. I watched a few videos and thought posting a video seemed simple so I played around for a bit and made a few videos for fun. It was in June of 2023, Dravet Awareness Month, when I decided TikTok might be an interesting way for me to share my son’s story with Dravet Syndrome on social media. Sharing publicly instead of privately with friends and family was new to me and I wasn’t sure how comfortable I would be having the world know certain information, so I decided to share in a way that my husband and I felt comfortable with. We opted to never show his severe seizures to give him a bit of privacy and also so that we could continue to focus on his medical care and not recording him. We also opted to not share his name (we refer to him as B, the first letter of his name) nor where we live. For each day that June, I shared a Dravet fact or a story of B’s life and I stuck to posting everyday for that entire month. The videos didn’t take me long to create and I preferred showing videos of B or our family with captions over me talking to an audience. When the month was over, there was still so much to his story I wanted to share and so I decided to continue posting on social media.
Two and a half years later, and our followers to B’s story continue to grow. We have had millions of views to our pages on both TikTok and Instagram, views that we felt helped to bring more awareness to a rare disease.
Our lives as Dravet families each have a different story because each of our kids are different. What works for one might not work for another and along this social media journey, I have met over a hundred other Dravet families from all over the world while also educating the public on what Dravet looks like for us. I felt I was finally letting the world know about life with Dravet and how that may look families like ours. For me personally, the highlight of sharing B’s story on social media was last February when People Magazine reached out to us to asking to feature us in one of their stories. I felt this article may help bring even more awareness to Dravet Syndrome and quickly agreed to share a bit more of B’s story with one of the biggest magazines in the U.S. Stepping out of my comfort zone 2 years ago was helping advocate for my son and I felt that maybe this would help not only educate others about such a rare disease but maybe it would help to fuel research and funding for our children.
As we continue to post, I’m thrilled when I find more and more families joining the social media journey of spreading awareness. These families, like us, share in a way that is comfortable and works for them. Some have shown more severe seizures and how they handle them, others may discuss meds and therapies that have worked for their child. I feel we have created yet another little community where we love and support one another’s pages. I’ve been able to put names to faces and have had more of a connection with these families when we meet in person, all due to a simple posting on social media. Like our Facebook support group, our social media community lifts one another up. A connection I longed for in the beginning of B’s Dravet journey, I’ve been able to find both online and in person. It’s a journey no family should have to make alone and I’m thankful to have found that support system.
