Introducing our beautiful, courageous, kindhearted 8 year old daughter Jenna Jay! Jenna is a twin, so when we noticed she was not meeting her milestones like her twin, we took her to our local pediatrician. We were then referred to a pediatric neurologist who performed a routine MRI, which confirmed a diagnosis of Subcortical Band Heterotopia and pachygyria. Basically, Jenna has a brain malformation which occurred in the womb. As a result, Jenna has intractable epilepsy. Jenna has tried and failed over 20 AED’ s, has failed VNS surgery, and failed many diets.
Jenna has up to 300 tonic clonic seizures per month, many causing her to stop breathing and require CPR.
When we saw Charlotte Figi’s story on CNN, we knew this was our only hope to save our daughter from these horrible pharmaceuticals that continued to deteriorate her and failed to control seizures. We picked up our family from Minnesota in January 2014 and moved to Colorado, desperate for a miracle.
We have been on a waitlist since October 2013 for CW and are currently on THC-A oil until Charlote’s Web CBD oil becomes available. We have seen some progress already, more alertness, less seizures, but more intense. She is off 1 med already, so praying that we find continued success and can take her off all 15 pills she takes per day!