Azaria Sage was born with a rare neurological disorder called Aicardi Syndrome (brain malformations, vision impairment, developmental delay and intractable epilepsy). Her first seizure happened in utero, before she was even born. The seizures have continued every single day of her 11 years of life. Azaria has 10-20 daily seizures despite being on 4 pharmaceutical drugs. As an infant she suffered 100’s of seizures per day, they were literally nonstop.
It’s safe to say Azaria has had over 60,000+ seizures in her life. One day one of these seizures may take her life.
We have tried many different medications. It seems that every year we are adding or changing medications. We’ve ordered anti-epeliptic drugs from Canada that were not approved or available in the US. We’ve tried alternative therapies, herbs, diets and even had her evaluated for a hemispherectomy to see if removing part of her brain would help (she was not a candidate because her seizures were coming from both sides of her brain.) We have done everything we can think of to stop her seizures, to improve her quality of life and happiness. Our goal for her to ever be “seizure free” changed to “just don’t let a seizure kill her”.
Last year Azaria was having about 30+ seizures a day, and there was an increase in seizures that required emergency intervention. Her doctor recommended adding another drug. This drug put Azaria through a nightmare of a psychosis. She was terrified one second and then switched to laughing hysterically the next. This went on, non stop for more than 24 hours. We immediately began weaning her off this drug and that was the last straw for us. We took her to see a physician that gave her a recommendation for medical marijuana.
Living in California, we could walk in to any dispensary we wanted and buy medicinal marijuana. What we quickly found out was that not very many dispensaries have the high CBD tincture that we were looking for. Once we got a tincture we could trust, we started giving Azaria small amounts. We saw an immediate decrease in seizures, more clarity (her brain was no longer firing off all the time), and no side effects. Today we have more hope than ever that yes, she CAN be seizure free!! The quality of life, clarity, and happiness that every parent wishes for their child IS achievable for Azaria too, thanks to medical marijuana.