Magna Tiles & Pediatric Epilepsy: My Message at Care+Cure 2018

You know I was on the phone with my friend Emily two days ago telling her that I hated my speech. I’d written one and chucked that. I wrote the second one and was completely unhappy… And she said that’s because last year you told your own story and it came straight from the heart… This year tell someone else’s story and with you it’ll still come straight from your heart, and she’s right. Whenever I speak about epilepsy, it comes straight from my heart because I live it. And people always say speak what you know. And I know this- epilepsy is a family disease and every time I watch that video, hear that mother’s voice, her desperation, I get the chills and I think- when is it enough?

Is it once we hit 66 million? 67 million? We’re already at 65 million people with epilepsy… Isn’t that enough? 150,000 people in the US are diagnosed every year, 2 million in the world every year, when does this cause, this disease, us, and these children – when is it enough?

Is it when we surpass the number of people with cerebral palsy, autism, Parkinson’s, and MS combined? Well we’re there. We’ve hit it. Do we have to have more people die every year from seizures and epilepsy than breast cancer? We’ve accomplished that too. Is that enough? Does that finally make this cause important enough to fight?

I watch that video, all three minutes and 25 seconds, over and over and over again and no matter the number of times that I have watched it, the breaks in that mother‘s voice, the torture in her tone and the visuals of children having all different types of seizures crushes me every time. I cry… in fact just last night I watched it and I was sobbing uncontrollably. She says at the end of her message “because this is so much hell.” That’s her baby – she’s watching her child suffer through something that is beyond her control and beyond the control of anyone else. I have a five-year-old and there’s nothing worse than knowing your child is in pain and being absolutely helpless to relieve them of that pain.

And then also I can’t imagine, even though I’ve seen and met and heard the stories of so many parents of children with epilepsy, I can’t imagine watching your child deteriorate and recede back into him or herself… Or never even flourishing in the first place. All because they didn’t have enough timely access to specialized care for their child. All because we’re not enough?

I remember one night after watching that video, I closed my computer, done for the day and joined my husband and son in the living room. They were playing with magna tiles. If you’re a parent you’re probably familiar with them. They are these squares, triangles, cylindrical shapes, everything, with magnetic sides that hold them together. We’ve built towers almost as tall as me, and the balancing acts we’ve managed to create have been pretty spectacular. Each time we take on that challenge together, something new and amazing is created. But also many times we’ve gotten to a certain point and watched it crumble and fall. What we always discover is we didn’t have enough support; it needed to be sturdier to become as beautiful and perfect as we’d imagined on its own. We know now, after many nights with popcorn and collapsing towers, the most important thing we can do together in our building is provide support.

Those moments of building accomplishment come often to us. The designs may fall but my son has ease in starting over again. For families like the ones in that video, there is no ease, you can’t just start over; we don’t have enough care and there’s still no cure. That’s where you and I come in-

WE are the magnets. The support needed to lift a child from helpless to hopeful, from trapped to freed, from exiled to connected. That’s us.

That’s what I thought that night after closing my computer and joining my boys. Whether in a small living room or a hospital room, the binding that seals a family, gives it a vision, brings hope, and allows them to build something beautiful, without fear of collapse. A creation that stands firm, remains steady, and is whole, not part. Together. Children, growing, developing, building; families thriving, not simply surviving.

Then, I look at the progress we’ve made, here in Orange County, and I say- Welcome, everyone!, To the second 0C care and cure epilepsy gala! Woooo! I am so incredibly excited to see All of the new faces in support of this cause and all of the beautiful faces from last year that helped us achieve our goal. In fact, I’d like Dr. Urgun to please stand up. Everybody, this is the epilepsy specific neurosurgery fellow you funded last year. He’s done an incredible job, has been in on so many surgeries and the passion I hear and feel every time I talk with him is incredibly inspiring. Thank you Dr. Urgun for your dedication and hard work in a field that so desperately needs it.

Here in our backyard last year, pushing for the thousands of children and their families who fight this disease… we looked at a goal we thought previously impossible but with the incredible help of LEAD OC and our determination, we did it.

Fortunately in our first solo year, I have an incredible honoree, committee, and boss by my side. And so importantly, the doctors that I work for and with. Not doctors, not neurologist, but epileptologists- those dedicated and brave enough to take on a populous but underserved and under addressed field. I am honored to work with you all. And to continue working by your side and for you as we forge better healthcare for those with the world’s most common neurological disorder.

Failure in fighting this disease is not an option. It is never an option. Not when so many phone calls reflect the desperation in that mother’s voice and so many children are lost, trapped in their own minds, wondering when they’ll have some sort of relief, while their families wait months for vital healthcare. But we are so lucky tonight; this, here, is our opportunity to help foster more dedicated professionals, more epilepsy specific care, for these children.

My parents were once those parents who were terrified for their child. Who were terrified of what they didn’t understand. And I am that child who is sometimes still terrified of what has and is happening to me, and my lack of control. Tonight, we take control. We are blessed by the fact that we can change the trajectory, the future, the hope, and the happiness of so many children in our community and eventually so many beyond.

So tonight, you may hear struggle and it hurts that it is so incredibly and tragically real, but I ask you to take that and turn it into power, make that our strength, use it as a catalyst and take charge of the gift that we can all give each other – The gift every sweet, innocent child deserves –happiness, health and our support for their future.

I beg you, tonight, be the magnet… And let’s build something spectacular.

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