Tell us about yourself and the Dravet patient in your life

For 18 years we have fought Dravet syndrome. Tristin had his first official seizure at 4 months old.  Looking back though, I believe he was having seizures much earlier. Dravet syndrome has not stopped us from living. We camp, do coastal visits and go out to eat, but Tristin’s favorite thing to do is stay at a hotel, any hotel! He just loves them! 

Today his seizures are very unpredictable. He has mostly drop seizures which are short in length but very hard to watch. Because of this, we have to be more vigilant with him, to protect him.

When did the patient’s seizures begin?

At 4 months old officially but I suspect much earlier.

What is your hope for the future your loved one? For the Dravet community?

Just to be happy in life, enjoy every day!

What advice do you have for newly diagnosed Dravet families?

It’s a long hard road, but you were chosen for this.