Tell us about yourself and the Dravet patient in your life
We live in Ambler, Pennsylvania. Jaxton loves to go to Hershey park, the beach, the zoo, the aquarium, play with his cousins and play with his bunny and puppy.
When did the patient’s seizures begin?
With Jax, it seemed that nothing was wrong until a sudden GTC seizure that took us to the hospital at 5 months old. He the began to present Myoclonic jerks. He had his next GTC that was 50 minutes requiring a medivac at 7 months old. We then received a diagnosis after genetic testing at CHOP.
What is your hope for the future of your loved one? For the Dravet community?
My hope is for a cure. There is promising studies going on that give me hope that one day we will live in a world without Dravet. I also hope for his Photosensitivity to improve as the sun and tv are immediate triggers.
What advice do you have for newly diagnosed Dravet families?
Have hope. Take in the good days. Lean on family and friends. Your Dravet momma’s and daddy’s will always be there to support you as well. Remember to enjoy your baby, to them this is life and they still want to see you happy too 💜
