Erin Frost
Apex, NC
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
When Mia was about 2.5 years old- the team ordered genetic testing since nothing was controlling her seizures. And they kept getting worse. Just before turning 3 years old, we found out that Mia had an abnormality in her SCN1a gene. We didn’t really understand what that meant for quite a few years. But, it helped the doctors take her off medication that making things so much worse- sodium channel blockers.
What are some of the biggest challenges you’ve faced as a caregiver?
The challenges have changed over the years. For many years, I lost myself completely to a world that was hyper focused on seizures. This included the fear of the next one, how long would it be, will we go to the ER today, will she be intubated and ultimately a fear of losing her any day and finding her not with us anymore. As she’s gotten older and things have improved- each phase in childhood and teen years has brought on new challenges but my ability to face them has gotten better over time.
How has Dravet syndrome impacted you and your family's daily life and routine?
Dravet Syndrome has impacted our family and those impacts have changed over the years. Now, we are able to spread out wings more and be more adventurous as a family. But, trying to keep Mia on the same sleep schedule as much as possible is always on my mind to keep her from becoming too fatigued. Watching the weather and temperature is something that we always think about, especially for outdoor activities. We still weigh out the benefits vs risks of an activity but we are able to do more as a family.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Try to remember to take it on day or even one moment at a time. Your child has their own journey and it will not be the same as any others. Our kids have so many similarities and differences. Trying not to compare our story with others can be difficult, especially in the beginning. But, focusing on what can help your family unit thrive through these times- will be so big. And giving yourself grace will go a long way. You are doing the best you can and will mess up. And that’s ok- keep getting up and keep going. You are the best caregiver for your child.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
The Dravet Syndrome Foundation was my first resource. I also love the Danny Did Foundation.
What moments or achievements have brought you hope and joy despite the challenges?
Being able to fly across the country as a family was huge for us. Seeing my daughter still find a way to smile, even on the hardest days- always gives me hope and brings me joy.
How do you manage the stress and emotional strain that comes with caregiving?
I am not the best at this. But, I like to journal. I pray and do daily devotionals- my spiritual life is a huge part of who I am. I try to stay connected to other moms who understand my journey.
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
Not sure how to put this into words. Our family has been to 3 Conferences and one Day of Dravet and being able to be with families who get our journey is priceless!! They make these events so special for the entire family, including the siblings of our Dravet Warriors. Knowing that each member of our family is fully supported and has friends who “get them” is so important and monumental for our growth as individuals. They’ve provided information, research opportunities and amazing Facebook communities.
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
My daughter just turned 17. I still watch her in awe and so thankful for her amazing life. She is so happy and full of joy despite all of her hardships along the way. There is no crystal ball for how it will turn out- but I can tell you, your warrior will inspire you and teach you more than you will ever know.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
I have so many- but having both of our girls receive special gifts from the foundation helped us feel loved from afar. Mia gets her special birthday gift box each year and Hannah got her VIP sibs box and still loves it.
