Livy's Hope Blog

Welcome to the Livy's Hope Blog!
Jonathan Scheinman

Make a Stand for Change

When Lemonade For Livy started, we had no idea it would grow to the national initiative it is today. The campaign has come a long way since we received a call from a mom down the street explaining, “Megan and Madison just went outside and raised $80 for Livy at a lemonade stand. They called it Lemonade for Livy.” Much has changed since that first stand. Countless hours have gone into getting the word out about funding epilepsy research for the Epilepsy Foundation of America and to telling the story of what the campaign means to us and to the community. There have been days, or should I say very, very late nights when sleep was so enticing and the hours rolled by…1 am, 2 am, 3 am… Even during times when Livy wasn't doing well. But we kept pushing forward.

Looking back now, every moment has been worth it on many different levels. Behind every tick of the clock, there was the hope that if we can just register one more stand, if one more person can share the story, then we would be that much closer to a cure; a cure for Livy, a cure for the 3 million people in the US and a cure for the 65 million people worldwide living with epilepsy.

Hailey and Livy Scheinman

Helping My Sister

Hi. This is Hailey. For those of you who don't know me, I am 9 years old and I am Livy's twin sister. I wanted to talk to you today because I have something very important to say. I want to tell you about Livy and some of her friends.

Jonathan Scheinman

Don't Give Up. Give Back.

Most of us will face a traumatic experience at least once in our lives. Where we feel we can no longer keep going. Where every day seems like it is a fight just to get through. We wish our days away hoping for an answer. Am I on the right path? Am I strong enough to make it? How will I keep going? We have been in that very same position with Livy a number of times. For years, we didn’t know how we could function in a normal capacity ever again. We were angry. We were heartbroken. We were devastated, confused and lost all at the same time. And most of all, we were so sad for Livy and all she went through.

Our last major hospital stay due to uncontrolled seizures was in April of 2010. It had been a year since Livy’s hemispherectomy operation. We were gradually starting to see her seizures get worse. We asked ourselves, “What are we going to do this time? She can’t have any more surgeries?” Allison called me from the pediatrician’s office since we always follow protocol to make sure nothing else is going on. Shortly after the doctor assessed her, he said, “Get her to the hospital, now!” and off we went.

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.

Jonathan Scheinman

And The Award Goes To...

Anticipation, nervousness, excitement…they were all over Hailey’s face on February 21st. We arrived at the a la Cart Pavilion in Tampa to attend the 8th annual WEDU Be More Awards which recognizes many of the unsung heroes in the local community including non-profits and other individuals who go above and beyond. Hailey was nominated and was a finalist for the Be More Inspiring: Rising Star Award because of all that she has done to help raise money for Livy’s therapies. It started back in November when we were told by Hailey’s principal who heard from her music teacher that he had heard from a friend about her nomination. To this day, we still do not know who nominated her but we are incredibly grateful. The guideline was that the nominees with the most on-line votes would be selected as finalists and then judges would decide the winner. This set off a flurry of voting from our family and friends. People could vote once per day. I was told that reminders were set and reoccurring appointments on calendars were created so as not to forget to vote each day. Thank you to all who voted!

After the voting was complete, we were ecstatic to learn that Hailey was a finalist! This meant we would be invited to the WEDU celebration where the winners would be named. None of us knew what to expect at this point so we got our tickets and prepared for the day. I had watched the video from the previous year’s award ceremony and I advised Hailey that she may want to write down a little something to say if she was lucky enough to win. She got right down to it and wrote a paragraph on note cards which she then rehearsed a handful of times. I am still amazed that at only 8 years old how comfortable and poised she is when she speaks in front of others. Credit that to her gifted program at school and to the times our family presents to her classmates or at disability conferences.

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