This is my sweet little Lucy. She is a 15 month old that is full of smiles, laughter and life! We hope more than anything that this description of our child will never change.
Lucy had her first seizure at 7 months and received a diagnosis of Dravet Syndrome three months later. We were fortunate the Doctor caring for her was familiar with Dravet as it is a rare disease. Dravet is known as being a catastrophic form of epilepsy that is intractable (not responsive to medications) and affects roughly 1 in 20 to 40k. Among many other issues it is associated with developmental delays and an increased rate of morbidity.
We, like all of these other families want options. Cannabis has proven to be an effective option. When your choices are very scary pharmaceuticals that can very easily do more harm than good vs a natural plant that has almost zero side effects, for someone in our shoes it’s a no brainer. We want the absolute best for our child and for her to have the greatest potential possible for her future. We don’t currently know what her epilepsy will mean for her or for us long term. Dravet is a spectrum and her chances of being on the mild end are not in her favor. Our plea is for compassion and understanding to give everyone with a need access to cannabis.