Sep 25

Sep 25 For all the bugs

Did you catch CURE Epilepsy’s virtual benefit last night? While we definitely missed seeing folks in person it was incredible to share the evening with our epilepsy community across the world. What an amazing night! If you missed it you can still watch it on YouTube or Facebook and I highly recommend doing so. For the last couple years I’ve included my speech from CURE’s big Chicago benefit as a blog post and even though more people were able to view it live this year than in the past, I believe there is still value in recording it here. Every word of this appeal is true and written from my heart. Thank you for reading and thank you for your support.

As you just saw, Vera is an amazing little girl living with epilepsy. But as vibrant as little Vera is on screen, it is nothing compared to being in her presence. It was towards the end of my first visit with Vera and her family when she spotted the ladybug tattoo on my wrist that I got on what would have been my daughter, Adelaide’s, 4th birthday.

We said goodbye to our Adelaideybug five days shy of her fourth birthday last October. After seizures had ravaged her body for the majority of her life, her brain began to shut down unable to grow and develop as it should have. She was in my arms and surrounded with love when she took her final breaths.

Vera was enthralled with my tattoo and kept touching it with a big grin splashed on her face.

“It’s a ladybug”, I told her. “For a very special little girl”

“Buh” she repeated.

I smiled, tears in my eyes, “that’s right, Bug”

Later that night, when Cindy was giving Vera a bath Cindy told me that Vera kept pointing to her wrist and saying “Buh” “Buh”

Yes, sweet girl, you, too, are a beautiful warrior just like my fierce Adelaide. Keep fighting the seizures, symptoms and side effects. But know that it is our responsibility, as parents, loved ones, friends, to fight for you. And the only way we can do that is together. Better epilepsy monitoring units are great, new treatments are even better but what we desperately need is the research that will lead to true answers. To cures.

Because no parent should have to hold their child while they seize, no individual should live in anxiety and fear of when and where the next seizure will hit. No one should have to wake in the morning realizing that their loved never will because SUDEP has stolen them in the night. No one should have to hold their child as they take their last breaths after epilepsy damaged their brain beyond repair.

No. I promised my bug, my Adelaideybug that I wouldn’t stop fighting. That her struggles would not have been in vain. Tonight I am desperately asking you to stand with me in support of research for a cure. We cannot will or wish epilepsy away. I tried, my goodness, I tried. No, only research can do that. And there is no organization in the world more dedicated to funding patient-focused research than CURE. I may have lost my daughter but I haven’t lost my hope that cures are out there just waiting to be discovered. Science didn’t catch up to my daughter, but we must support CURE so science can catch up to Vera and all the others impacted by epilepsy. And with your help CURE can fund the researchers waiting to make those discoveries. Please donate in memory of YOUR Adelaide, in honor of YOUR Vera, and for all the beautiful bugs yet to come.