Episode 6 of 7
[youtube https://www.youtube.com/watch?v=6XJLRA5rqjc]
Five years ago Dara and her daughter Maddy moved to Colorado when Maddy was almost 9. “My life has changed…I don’t like seizures, but I’m just glad that I’m not the only one in this world that has seizures, and I have friends that have seizures,” says now 14-year-old Maddy.
Dara talks extensively about how Maddy’s seizures affected her memory; something many of us never consider because we take our ability to create and store memories for granted. At one point, Maddy’s memory was so poor that immediately after eating a sandwich she says she is hungry and has zero recollection of eating just a few minutes ago. She would spend time with her family and not remember one thing that she did for fun. This became a daily occurrence in addition to severe seizures.
For years, Maddy had intractable epilepsy which meant no medications would work. The doctors didn’t know this at the time and kept prescribing more medications. She tried more than six different pharmaceuticals with tons of side effects and also tried the ketogenic diet. On the medications she wasn’t herself anymore, she was angry, irritable, and frustrated at the tender age of 6 and 7 years old.
At one point she was under observation for 4 days in Johns Hopkins University and her neurologist concluded that 80% of her sleep included seizure activity and overall Maddy was having many more seizures than they previously thought.
More heavy-duty and addictive medications that were “slowly killing her” were prescribed. After more time had passed the doctors said, “The only thing we can do is remove half of her brain.”
Really? This was Maddy’s only hope? After Dara watched a video of other kids with seizures having success with CBD oil she wondered, “could this actually be an option for Maddy?” It sure sounds easier than removing half of her brain.
In 2013 they made the biggest decision of their lives and moved to Colorado to try CBD oil because moving across the country was the only legal way to gain access. Five years later, Maddy still hasn’t had brain surgery or any surgery for that matter and is thriving as a teenager.
We hope in 2019 we can raise enough funding to close the gap and no longer have to turn desperate families away. To give a grant to every person who applies, we need around $2,600,000.00. You read that right. 2.6 million dollars. Every dollar counts.
