With his diagnoses: UBE2A, pineal cyst and grey matter heteropia/cortical dysplasia he will never have a normal EEG nor is he "cured" of his Epilepsy. (I'm only stating that so people don't confuse his current success with not needing to worry anymore because Epilepsy is a cruel beast for which there is no cure and we must always be prepared!)
However, we have been given a great gift. We have been able to see our son thrive and grow. We have been able to wean over 3/4 of his last Benzo. We have changed minds and maybe even a hospital policy.
We have fought for law changes and have met our local Representatives, U.S. Senator and Congressman to tell them our story in hope that it helps change their mind so they help other people too.
Abram has come a long way physically and cognitively. He's giving us kisses, making sounds, growing like a weed, becoming social (and BOSSY!) And he's finally able to just BE a little boy who loves kitties, fire trucks and who thinks farts are hilarious.
If and when another seizure strikes, I know that we have amazing support because this journey also brought incredible people into our lives whom we never would have met otherwise.
Cannabis oil gave Abe a quality of life we never knew existed. I never expected to be here. I had no idea I would have to fight for law changes to get a medicine our sons doctor felt was best, yet here we are.
Abe has taught me so much and brought so much love and light into my life. Happy Seizure-Free Birthday, Bubster! In another week you turn 4! Mama loves you so much!!!!!!
We use Haleigh's' Hope and it has changed our lives.