Welcome to my blog, Decoding Dravet. For those who don’t know me, I am Mary Anne Meskis and I was one of the founding members of the Dravet Syndrome Foundation, along with Lori O’Driscoll, Amanda Renz and Janice Stanley. In 2009, we were just a small group of parents who wanted to help our own children and saw the desperate need for research specific to Dravet syndrome. We learned quickly that epilepsy research is highly underfunded in general, so it became obvious that if we wanted answers for Dravet syndrome, the funding efforts would need to be parent-driven. Since 2012, I have served as the Executive Director for the organization. My husband and I reside in Illinois and have three adult children – Dylan, Sophie and Elliot (who has Dravet syndrome). As fate would have it, I am sharing my first blog post on Elliot\’s 19th birthday.
My desire in starting this blog is to keep our community informed on the many things going on behind the scenes at the Dravet Syndrome Foundation (DSF) and within the field of Dravet syndrome. Being involved in the Dravet community for over 15 years, I have had the privilege to be on the front lines and know about things that are happening that most of our community may not be aware of. That information has often given me hope on the bad days and I want to be able to make those updates more readily available to each of you so you have a better understanding of the exciting and positive things that are happening. I also think it is important for you to know how we have come to where we are at today in Dravet syndrome research and how we can work together to address the gaps and needs that remain.
When Elliot was finally diagnosed in 2004, I turned to the internet for information. At that time, if you googled Dravet syndrome, there were only 3 results – versus the over 421,000 available today. One of those results led me to a Yahoo Support Group that had been established by some families in the UK and that was moderated by another Dravet parent, Kate Watts. Until that point, no one had understood our journey and what our son was experiencing. Dravet syndrome is a difficult and complex disease to manage, and it is often socially isolating. It was such a gift to find this group when our family had been mired in fear and uncertainty for several years. That group was my lifeline. At the time I joined, I was only the second parent from the U.S. and I don’t think there were more than 40 families represented in total. I am sure many, if not all, of you understand that support from another parent who truly understands your journey is priceless. I am forever in debt to that original group of parents and their support and guidance when I needed it most.
Life with Dravet is hard. No parent should have to watch their child suffer or struggle. They shouldn’t always have to choose between the lesser of two evils. When Elliot was diagnosed and we asked what the treatment protocol was, I was shocked to learn there really wasn’t one. In fact there weren’t even established best care practices at that time. It seemed unfathomable that the syndrome was recognized and had a genetic marker, but no standard treatment. Instead, Elliot became our personal science experiment as we trialed different medications at different levels and combinations until we found a protocol that offered him some relief.
I understand that when you are the parent of a child with a rare disease like Dravet, science cannot move fast enough. We want – and our children need – answers now. No single person or effort is going to find a cure for Dravet syndrome. For me, being a part of that original Yahoo group really showed me the power of a community. Our ability to achieve positive changes and better options for those with Dravet syndrome in the last 15 years has happened through the power of collaboration – including not only our patient families, but also clinicians, researchers and industry members. Through this synergistic effect, the Dravet community has been able to accomplish amazing things in a relatively short time, including new treatment options now available and on the near horizon.
Each of us is at a different stage of this journey and have faced days when we feel alone and helpless in battling Dravet syndrome. But I want you to understand that you are a vital part of this community and have an important role to play. Your voice needs to be heard. Whether you complete a survey, participate in research, volunteer your talents, host a fundraiser, or offer advice or support to another parent who is struggling – those are all things that make our community stronger and help move our objectives forward. No effort is too small, and every effort does make a difference.
New blog posts will be posted each Friday, and later this year I will be inviting guest bloggers from within the Dravet community. I hope you will continue to follow this blog, and I would love to hear from you on what you want to know and what information would be helpful to you. Thank you to each of you who continue to fight for the child or adult you love, as well as their Dravet brothers and sisters. I leave you with this quote, which I have found to be reassuring for me on this journey.
“The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” -Barack Obama
All the best,