Livy's Hope Blog

Welcome to the Livy's Hope Blog!

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.

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A Father's Promise: Making A Stand Against Epilepsy

I promise. Two little words that we so often over use. I promise I will wash the car. I promise I won’t tell a secret. I promise I will be home early so you can go out with your friends. I promise. But what does that really mean? It means a commitment to do something. It means someone trusts you to follow through on your word.

I made a promise to Livy many years ago. It was no small promise and is one that has utterly changed my course in this world. I promised to do whatever I could to help her and to find a cure for epilepsy. In 2009, she was in the hospital with uncontrolled seizures. I sat there watching the nurses put Ativan in her IV. Then I watched as she began seizing again only a half hour later. This went on and on for two months until she eventually received a hemispherectomy; an aggressive procedure that disconnected the left side of her brain. It was her second brain surgery. She continued to have seizure after seizure for another month until we finally regained control. That hospital stay seemed like an eternity. I left the hospital a different person on many levels.

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Recent Comments
Guest — Lampert's Therapy Group
Jon, we're happy and proud to stand by you and help you with your promise to your beautiful daughter. You and your family are an i... Read More
Friday, 19 June 2015 10:06
Guest — #Guest
hello can i have your personal email address?
Saturday, 30 July 2016 17:57
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Will You Stand With Us?

This past week, we sent out an email to family and friends. I thought it was important to share since many of you have been following our story from the very beginning. For years, we have watched Livy struggle with epilepsy. We have shed many tears and experienced tremendous heartache as she courageously fought through episode after episode and multiple surgeries. In the end, what Livy needs is a cure.

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Guest — Maureen Magagnos
I am so impressed ! Heartfelt We will stand behind your family. We have just gone through the nightmare of uncontrolled epilepsy w... Read More
Tuesday, 22 July 2014 23:52
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Lemonade for Livy: The Path to Peace

Ever since the girls were born, I, as a father, have constantly struggled with finding a purpose for what Livy goes through. At first it was the never ending seizures and brain surgeries. Then a broken leg, then precocious puberty and then a fractured heal. Now it is her permanently dislocated hip which causes her discomfort each day. Watching the look of pain on her otherwise glowing face is torture. For a little girl to go through so much doesn't seem fair.

Over the last nine years, I have been able to focus on various projects and my daily routine to keep me sane. I am an avid gym rat which is where I have blown off a large amount of steam when it comes to my squabbles with God, doctors and epilepsy. The latter bearing the brunt of my fury. When those we love are hurting, it is human nature to want to blame someone. But I have run out of blame. After tens of thousands of seizures, blaming someone or something seems futile and a complete waste of energy.

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Recent Comments
Guest — Gary Parrish
I am praying for you, Allison, and hope that you find the peace you are searching for.
Friday, 13 June 2014 06:40
Guest — Anita Morrison
Thank you for sharing your story. My developmentally disabled sister has suffered with seizures since infancy. You are right in ... Read More
Friday, 13 June 2014 12:27
Guest — Geri Booth
What a beautiful piece, Jon. You and Allison are my inspiration. You have inspired me to not give up and to give back. My life has... Read More
Friday, 13 June 2014 16:31
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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
Guest — Suhail Bury
Wow! That's amazing! Hailey is such an example. I encourage my kids to help with fundraisers and I had shown Nathan some of Hailey... Read More
Thursday, 13 June 2013 09:12
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
Guest — Gary Parrish
Great post, Allison! Just a small glimpse into the pain and heartache that you all have been through and it touches my heart. I ha... Read More
Thursday, 13 June 2013 09:28
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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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Recent Comments
Guest — Harold Lampert
Beautiful video; you guys are amazing!
Friday, 31 May 2013 11:42
Guest — Carol
Jon, I'm sure I won't be the first one to suggest you write a book. You are gifted... I'd like to buy a campaign t-shirt but didn'... Read More
Saturday, 01 June 2013 09:55
Guest — Carol
Oops! Just found the shirt--hugs,
Saturday, 01 June 2013 09:55
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