Tell us about yourself and the Dravet patient in your life
Our family isn’t much, it’s dysfunctional and not very close, but what matters is that my son knows he is loved unconditionally. He runs the show with anyone he’s around. His favorite thing to do is watch cocomelon, color pictures, and drink chocolate milk. Kylen’s been a momma’s boy since day one and since then it’s been me and him tied at the hip. I hope that’s how it stays forever, he’s my happiness.
When did the patient’s seizures begin?
Kylen’s seizures started December 18th of 2019 at 6 months old, the morning after he had his 6 months vaccinations. I can not knowingly tell you what this disease has been like for my son, but I can tell you what it has been like for me. I vividly remember waking up to my baby boy uncontrollably shaking with drool trying to escape his airways. Lips turning blue as I’m dialing 911, scared for my son’s life. This happened several more times all out of nowhere. Never expected any of them.. some lasted hours, some only 15-20 minutes. We didn’t get a diagnosis until 6 months after they first started. I almost 100% knew what it was before the doctor told me, all of the symptoms matched up to what was going on with my son. I was told my son’s best bet was to move to Chicago so he was closer to a better hospital, I did not have the funds to do so and felt horrible for not being able to get my son the best care I could. For months after the diagnosis I was lost, I was stuck in a constant loop replaying what would happen if my son were to die, the things I’d say at his funeral, how terrible my life would be afterwards. Even now, I get stuck in those thoughts, but eventually I reached a point where I knew I needed to focus on him now and enjoying him now rather than worrying about if he’ll die the next day.
What is your hope for the future of your loved one? For the Dravet community?
My hope of course would be someone miraculously finding a cure for Dravet, but unfortunately that’s unlikely. At least a medication that continuously works in preventing seizures would be nice. My hopes and dreams for my son would be that he gets to live as close to a normal life as he possibly can, I hope he’s always happy, and I hope that he outlives me. Every parent deserves that.
What advice do you have for newly diagnosed Dravet families?
This parenting thing did not come with a manual even for “normal” children. Let alone a manual for children with special needs. Weigh your pros and cons cause nothing is fair in Dravet. From the side effects to seizure control, do what you feel is best for your baby. In all reality, the cold truth is any day with them could be our last.