2017 Walk to End Epilepsy

Team Ben Smith

 

Ben's Story

 

It was a little over a year ago that our world changed forever. Rob and I received a call that Ben had a gran mal seizure during basketball practice and was being rushed to the hospital. He continued to have a swarm of seizures. The next morning, Ben was diagnosed with Epilepsy.

Epilepsy is the most common serious brain disorder worldwide with no age, racial, class, or geographic boundaries. As all of you know, Ben was a perfectly healthy, thriving 13 year-old boy and then, boom two weeks before his Bar Mitzvah, his disease literally dropped him to the floor.

This first few months were a grueling trial and error period getting to the root of Ben’s seizures and trying to stop them. Multiple hospital stays, doctors visits, ambulance rides, missed school, exhausting meds, social isolation, and realizing your brain could fire off at any moment was his new normal.  Some meds made things worse, causing over 100 seizures a day, while other meds stopped the seizures but had side effects so severe that he wasn't able to function in school.  We were suddenly thrown into this unknown world terrified about what the future would hold for our dear Ben. 

After our initial struggles, our dear friends Adam and Dana Kaller put us in touch with the Epilepsy Foundation of Greater Los Angeles. Within two days, the foundation had arranged an appointment with the top epileptologist (specialized neurologist, aka, "the smartest person you will ever meet") at Children’s Hospital Los Angeles, Dr. Deborah Holder. Dr. Holder and her incredible team have worked tirelessly to get Ben on the right combo of meds so that Ben can live a normal seizure-free life. While it has taken more difficult months, we are happy to say Ben has been seizure-free since May.  We are hopeful...still white knuckling each day, but hopeful he will continue this way.   

Our biggest motivation is the hero in all of this… our sweet BEN. His resilience throughout this whole experience has been astounding. He has maintained his sense of humor about it all, putting everyone around him at ease. He just wants to play basketball, baseball, and hang out with his friends like any normal 14 year old.

 That’s why our family is walking to raise money for the Epilepsy Foundation of Greater Los Angeles. Many epilepsy patients do not respond to traditional medication, many don't have support systems, or simply don't know where to turn. EFGLA supports the thousands of families around Los Angeles in their quest to find the right treatment. Research into the brain is moving at an exhilarating pace. The EFGLA is at the foreftont of these efforts, raising millions of dollars for research and funding state of the art epilepsy centers, including those at CHLA and UCLA. We feel confident by supporting EFGLA millions of sufferers will directly benefit. We have already seen it.

How can you help? Most of you already have. The love and support we have received from our friends and family has been overwhelming. We are eternally grateful to all of you.

But there is one more thing you can do and that is to...

WALK WITH US AND/OR DONATE to TEAM BEN SMITH in the WALK TO END EPILEPSY AT THE ROSE BOWL SUNDAY NOVEMBER 5, 2017. 

WALK FOR BEN! DONATE FOR BEN!

With love and appreciation,

TEAM BEN SMITH

Rob, Margaret, Ben, Hannah and Annie

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