Tell us about yourself and the Dravet patient in your life
Helloooo, I’m Sielana Johnson, i have 2 beautiful daughters, Brynlee & Blakelee, married, and have a golden retriever, neyland, and a cat, Nova Lee! Brynlee is 7 years old & Blakelee is 5 almost 6 months old. We enjoy spending so much time together & playing fortnite and just living our best lives.
When did the patient’s seizures begin?
Blakelee had her first seizure on October 29, 2021, it had lasted 15-20 minutes, i had no clue what was going on, i had never witnessed a seizure in my life, until this day. I guarantee it was one of the most scariest times in my life. We took her straight to Children’s Hospital, she had test after test done everything came back clear, except her EEG, it was abnormal, we came to find out she was have Focal Seizures. Later down the road after trying Keppra, she then had a breakthrough seizure about a month later, we then added her another medication called, Trileptal, which they worked together for awhile, but then we found out she had Dravet Syndrome, we then switched her off of Trileptal, onto Onfi, and now to this day she’s on Keppra, Onfi & Topamax.
What is your hope for the future of your loved one? For the Dravet community?
I pray and hope she gets into PT/OT & Developmental Therapy and she starts getting ahead in all her milestones. she’s not reached much of them as of now, she’s almost 6 months old and can’t roll over, hold her head up, or even sit up. I pray they find a cure.
What advice do you have for newly diagnosed Dravet families?
alway keep your hope & faith. i suggest you find groups and families with the same situation you are in cause a lot of people don’t understand what you’re going through.