Tell us about yourself and the Dravet patient in your life
Our family of four lives in the small but mighty town of Pitman, located in south Jersey. However, our Dravet journey began in Boston. After meeting in college in North Carolina, my husband Adam and I moved to Adam’s hometown in Massachusetts where we began our lives as a family. Graham, our oldest son, now 12, and Dominic, age 8, were both born in Boston. At the time, we loved our very old New England farm house and enjoyed renovating it. As a family we would walk the trails that backed up to our home every day with our dog, Mello. Day trips were a favorite, to the beach or local park; we were active and enjoyed leading busy, full, lives.
When did the patient’s seizures begin?
Dominic’s first seizure occurred at 4 months of age and lasted 15 minutes. I will never forget the unusual, rhythmic moan coming from the baby monitor. Terrified, I dialed 911 and held him closely. Embedded in my mind forever, is the disturbing memory of rocking him, waiting for the paramedics and thinking about how I was going to tell his big brother… I stopped thinking, and began to pray. “Faith is deliberate confidence in the character of God whose ways we may not understand at this time.” -Oswald Chambers
To this day, I am uncertain if rescue medication was used to stop that first seizure. But I know now, it does not matter. As a Dravet parent, your focus changes quickly from what was and what happened, to what’s next; I am always preparing for the next seizure not knowing if this could be the one that takes him away from me, for good.
Following Dominic’s second seizure, multiple tests were performed, including genetic testing, which revealed a mutation of the SCN1A gene that is linked to the diagnosis of Dravet Syndrome. Dominic was having GTC (Generalized Tonic Clonic) after GTC. Recovery time was harder to manage than the seizures themselves. Shattered, we remained in a constant state of chaos, terrified every minute of every day. Dominic’s medications increased weekly, with no seizure control in return. On his first birthday, Dominic was admitted to the hospital to be induced into a medical ketosis with hopes this alternative treatment would provide him some much needed relief.
What is your hope for the future your loved one? For the Dravet community?
Living with Dravet Syndrome on the Ketogenic Diet is hard, filled with daily challenges, medications around the clock, and constant care. But even among the madness Dravet brings upon family life, Dominic has progressed in every which way. That’s my hope for the future, for Dominic, and for all children battling Dravet; that they make progress, that they are well cared for and well accepted. I want Dominic to be happy and comfortable, first and foremost, and to recognize that although life may pose grave challenges, it can still be full.
What advice do you have for newly diagnosed Dravet families?
Connect with other families, lean on them for support, and remember than no Dravet journey and no child with Dravet, is the same.
