Tell us about yourself and the Dravet patient in your life
Hello, This Is Jacob Dean. Jacob lives with his mother & step dad. We are from NE Ohio. He is going to be 11 years old August 2022. Jacob really enjoys skateboarding, he doesnt know how to push, but he can ride & hold his balance, & go down hills. Jacob also loves hotwheels, & watching singALong cartoons & shows, He can mimic an entire show if it has music involved. He is a very big fan of basketballs & hoops, he loves to make the basket. We often go on short walks to enjoy the outside weather without getting overwhelmed.
When did the patient’s seizures begin?
Jacob was a full term, healthy newborn. His seizures began at 3 months of age, & mom was A teen mother with a little support system, so Doctor after Doctor being diagnosed with muscle spasms, accused me of laying birth control around, etc. We finally had found a doctor in Akron Childrens who proposed the idea of it being Dravet Syndrome. He was then diagnosed with Dravet Syndrome via gene test at 1 years old, after multiple tonic-clonic seizures as an infant leading to being put on a ventilator on 4 separate occasions, after the accusations of neglecting, or being the cause of my son’s seizures, we had finally found an answer. Jacob was considered De-Novo case (made his own mutation) as I came back negative for the gene.
What is your hope for the future of your loved one? For the Dravet community?
My hope is that more awareness is spreaded for more funding on the science of our gene mutations, & the testing of better medicines with less side effects, my hope is that these beautiful warriors can one day be on a safe controlled medicine that will allow them to live as normally & the best quality of life they can! My hope is for the ones who have passed on, To be angels for the ones still fighting! My biggest hope is that one day we will be seizure free!
What advice do you have for newly diagnosed Dravet families?
My advice is. I was 13 when I gave birth to my dravet son, from a statutory rape. All I had was my mom to help me & she was even new to this. Just know It’s going to be scary & this is going to change your life & it’s hard and it feels like the world is crumbling down all around you. & will feel like your new home is that hospital room, & everything you once knew is gone, because everything you need to learn for your baby is A bigger priority. My biggest advice is. You are mom & dad. You know your baby best, you will make the best decisions for them. & also research all you can, join support groups online, medicines, the gene mutation itself! Educate yourself on Dravet Syndrome . It’s the best we can all do!
