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Livy's Hope Blog

Welcome to the Livy's Hope Blog!
Jonathan Scheinman

Are You Wearing Purple For Someone Today?

Today, March 26th, is World Wide Purple Day, 2014. It is a day when people from around the world don their purple to support those with epilepsy and to raise awareness. It is a day when we remember all those who have lost their battle with the disorder. For those warriors that continue their struggle each and every day, we want you to know that you are not alone and that we will fight with you.

Livy was up early this morning at 7:15. I let her know that it is Purple Day and that I am wearing purple for her. I reminded her that I will do everything I can to help her and that I will always be there for her when she needs me. I made that promise to her years ago and it is one I will keep for as long as I am living. I also told her that I am wearing purple today for her friend Taylor and her family who are currently having a very difficult time. Her friend Georgie and his family who have been through so much. Her friend Gabe and his family who deal with dozens of seizures daily and her friend Anna and her family who struggle every day.

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Allison Scheinman

Art Auction by Hailey "Summer Breeze"

Art Auction by Hailey "Summer Breeze"

August is the month of AUCTIONS for Livy's Hope For A Cure! We are asking people to create something original or find something they no longer want and auction it on eBay or sell it at a yard sale. Then, donate the money to help fund epilepsy research. 

Hailey has created this beautiful landscape of the Gulf of Mexico viewed from Dunedin, FL. The bidding begins today and ends in three days. Don't miss your chance to win this artwork and at the same time help the Epilepsy Foundation to fund research for a cure! Click here to visit the auction.

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Allison Scheinman

You're Kidding Me...Right?

I looked down at Hailey's face as she peered up to me with very serious eyes. Her point was clear. We were going to raise $1 million dollars for the Epilepsy Foundation. "You're kidding me...right?" I asked. She wasn't kidding and she was going to make me believe it. Jon and Hailey asked, "Can we count you in?"

A lot of people are going to think we're crazy. I know this because I thought Hailey and Jon were crazy when they told me what we were going to do. At her age, she does not understand the concept of $1 million dollars. But Jon, he knew what he was getting us into. He and Hailey always talk about grand schemes and outrageous ideas. They talk about inventions, business ideas, ways to combine foods. They are dreamers. They are believers. They are the kind of people that think anything is possible.

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Recent Comments
Allison Scheinman
That is wonderful that Nathan has been inspired to do a fundraiser! Kids are so amazing. They have so much strength and will and a... Read More
Thursday, 13 June 2013 09:30
Jonathan Scheinman

Livy's Hope For A Cure

It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.

After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.

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